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Sharing Our EB Story: Laurie Sterner & The Butterfly Fund, Part II

Last week, we began a conversation with Laurie Sterner, founder and CEO of The Butterfly Fund. She shared with us the inspiration and story behind the launch of her group. This week in part II, she shares why she stays committed to helping EB families and what’s in store for the organization and its supporters.

EB Resource (EBR): What campaigns and promotions has The Butterfly Fund been able to carry out so far?

Laurie Sterner (Laurie): We don’t necessarily have a campaign or promotion, yet we do our best to raise awareness for EB every chance we get. Whether it be having a booth at local fairs or festivals, or our own annual event – The Butterfly Ball. We use social media to reach a much larger group of people – Facebook, and even our own business, ljs Photography, has a link at our website, simply because the two are very intertwined. They both fill a place in our hearts. However, this last December we started a project called the Secret Stocking Project. We made little stockings that included 3 “wishes” for Christmas gifts from families who had sick children. These included gifts for the sick child as well as their siblings. We did diligent research in finding these families, knowing that the ones we chose were the most deserving. The project was received with an overwhelming response to help and participate, and I can proudly say that due to the community's outpouring, over 400 gifts were sent to all of these children for Christmas. We were so touched by the response that the 2nd Annual Secret Stocking Project will be underway again come November 2012!

EBR: So what’s next for The Butterfly Fund?

Laurie: The Butterfly Fund will be going through some wonderful changes in the very near future. Our plan is to get more people involved, even if not for The Butterfly Fund, but for something they are passionate about. Our mission it to get people involved, inspired and truly making a difference in this world. Our own business will be donating a percentage of all print sales to any organization of the customer’s choosing. We want people to follow our lead – we want people to experience the joy in giving, the joy in making someone else’s life a little bit happier. Some people just need other people to care, and it’s as simple as that.

EBR: If somebody wants to get involved with the Butterfly Fund, what are the ways they can do so?

Laurie: We are always looking for new board members as well as committee members. We always need volunteers for our event, and to date, we have been so fortunate to have so many selfless people who believe in our mission and us.

EBR: What do you personally take away from being a part of The Butterfly Fund?

Laurie: I always tell people that The Butterfly Fund never fills my pocketbook, but it certainly fills my heart. My husband and I have always been involved in something – some kind of event or organization that was there to help someone else. We realize that too may people wait for something to affect them personally before they will get involved and give back. I guess we were never those kind of people. We were very involved in another wonderful organization for children with cancer and it really filled our hearts. When we saw too much money go to salaries and unnecessary things and saw that people weren’t involved for the “right” reasons, we just felt we could do more. We’ve always felt that if you can so something for someone in need, you need to do it. We get this indescribable feeling when we do something that makes someone smile or makes someone cry. Sometimes just knowing, if even for a split second, we made another person's existence a little bit better – a little bit brighter – there is absolutely nothing in this world that can compare to that feeling.

EBR: In what areas of their lives do you think the EB community could use greater support, financially or socially? Where is the greatest need?

Laurie: Awareness is everything. How can you make a difference when you don’t even know something exists? Even after five years of telling everyone I know about this horrible disease, I am still shocked about how many people still have never heard of it. THIS alone has to change. I am thankful for celebrities like Courteney Cox, David Arquette, Brad Pitt and others, but THIS is where people will flock – people will follow when it’s popular and a celebrity brings this to the forefront. I think HUGE strides have been made with social media, which has allowed families to find each other. Families who may have never met before are becoming amazing friends and confidants. It seems there is still a need for supplies; even though there are WONDERFUL organizations helping, it still just doesn’t seem to get to everyone. Some insurance companies work with the families, while many others don’t … leaving the parents scrambling as to how they will afford bandages for the month. There are greater needs when the children become older, like the need for wheelchairs and handicap vans and housing. I know these needs are becoming more frequent now, and as far as I know, there is no funding for any of it. Of course, my dream is that one day, EB will be something everyone has heard of, but it will no longer exist. I’m not relying so much upon a cure, but I long to see a preventative. When a child with EB is out in public, I want for people to embrace that child and KNOW exactly what he/she has and know exactly what he/she goes through. Sadly, I have my doubts I will see this in my lifetime.

I say this, because I feel we still have so far to go. For as long as I can and as long as I am able to make a difference, that is exactly what I will do until my time here on earth is through. I am so thankful for the families I have met and the ones I still long to meet. I am thankful they have shared their stories with me and allowed me the honor to help them. I will forever be grateful to all of them for they have shaped me in to the person I know I was meant to be. I may be the Founder of The Butterfly Fund, but I feel more like the "messenger" of it. To put it simply, I cannot do this alone and I never started The Butterfly Fund to prove anything to myself or anyone else. I just wanted to provide a path to make a difference in the lives of children who are at the moment as fragile as butterflies. I know with all that I am, and all that I believe in, we can do this and we will do this.

Sharing Our EB Story: Laurie Sterner & The Butterfly Fund, Part I

This month, we celebrate a tireless EB advocate who has made a difference in the lives of families impacted by EB in her own unique way. She is Laurie Sterner, professional photographer and founder and CEO of The Butterfly Fund. Each year, her organization, along with her family, hosts The Butterfly Ball celebration and fundraiser to directly support EB families in need. This year’s event is tentatively scheduled for September in Sonoma, CA. To learn more about this annual tradition, visit the organization’s website for information about the event’s history and details for this year’s much-anticipated event as they become available.

Recently, Laurie shared with us a little bit about her own introduction to EB and what compelled her to launch the group. Here is part I of that conversation.

EB Resource (EBR): Laurie, tell us about how and when you first learned about epidermolysis bullosa.

Laurie Sterner: (Laurie): The first time I actually “knew” about EB was after I watched a documentary about 13 years ago called “The Boy Whose Skin Fell Off” – the story of Jonny Kennedy, but this wasn’t the first time I knew someone with the disease. I met a very young boy about 23 years ago who had this terrible skin disease. I didn’t know what it was – all I knew is he was the cutest little boy with this very horrible disease. I remember thinking to myself how sad it was; yet I never questioned exactly what he had. Years went by, and one night, a documentary came on TV and it was about the life and death of Jonny Kennedy. There was the phrase – epidermolysis bullosa – the same disease that this little boy I knew all these years had suffered from. While watching this documentary, I had never witnessed such gut-wrenching pain and suffering before, yet at the same time Jonny’s personality and tenacious spirit made me smile. I honestly have to say that just watching and listening to this young man's story truly changed my life. It touched a place in me I still to this day cannot fully describe with words. I remember asking all my children, who were young teenagers at the time, to watch the video as well. It was at this time that I told all of them that you would never have a reason to complain about anything in life. I watched this young man who suffered every single day of his life and never once complained about anything. To say it inspired me is an understatement. I know it inspired my children as well, as all four of them help us immensely.

 

EBR: What do you feel are the biggest misconceptions about EB and those living with the disease?

Laurie: There are too many misconceptions about EB. The biggest and most painful one (in my opinion) is that it is contagious. Bottom line, it scares people, and it shouldn’t. The other misconception that bothers me  is the fact that too many people think this could never in a million years happen to them. I actually had a mother of two beautiful children tell me how “unfortunate” it was that parents could have a child like this. The other misconception that I have heard too many times is many people don’t realize that so many parents have no idea their child will be born with this disease – they have this pre-conceived notion that parents “know” they are carrying this affected child and should never bring a child like this into the world. I guess there is so much testing for so many other genetic diseases that they feel EB is just another one of them.

 

EBR: So what prompted you to launch The Butterfly Fund, and how long ago was that? What is the main mission of your organization?

Laurie: The mission of The Butterfly Fund is to provide help and support to parents of a child with any catastrophic (life-threatening) illness or event. The Fund was founded in 2009, but we did not become an official 501c3 charitable non-profit until February 2011. So many people think we only help families who have children with EB, but this is not the case. Yes, EB was our driving force. We met so many families and children with EB and were touched beyond words. Maybe it was the unspeakable pain and suffering that EB causes or maybe it’s the smile on these children’s faces through it all … I don’t really know. I met someone who said that they didn’t choose EB … that EB chose them. I had never met this person, yet those words came directly from my heart. Our lives were also touched by children who have had cancer, leukemia, cerebral palsy and other disorders or handicaps. We wanted to include them all – our Butterfly Children – in raising awareness for the disease or infliction they had and to show support for what they were all going through.

 

EBR: How are funds raised through The Butterfly Fund used to help the EB community?

Laurie: One hundred percent of the net proceeds from our annual event go directly to family assistance in the form of financial aid, food, housing, clothing and care. Absolutely no salaries of any kind are paid and we keep our budget very, very low for our event. The Butterfly Fund does not discriminate, and anyone and everyone within the U.S. who has a child with a serious life-altering illness may inquire with us. We knew there were already wonderful foundations out there providing support and doing diligent work to find a cure, but we wanted to focus on the family – to show them we cared about what they were going through and try to help them in any way we possibly could. We don’t focus on the medical side – we focus on the heart side. The funds we raise through The Butterfly Fund are dispersed to individual families and organizations that we feel benefit the most from our mission. Since EB was the driving force for our foundation, we try our hardest to support organizations and other non-profits that work directly with EB patients and the need for a cure. We do our best to contact families that we become aware of through social media, community or personal requests. We offer support to organizations that can help them, and we offer a friendship so to speak. We listen to their requests and help in any way that we possibly can. We felt there is so much awareness for other diseases and it was so unfair that EB did not receive the recognition it so desperately deserves.

 

EBR: What originally inspired The Butterfly Ball, and can you tell me what people can expect at this year’s event?

Laurie: The Butterfly Ball was always my dream. I wanted to see an event that raised money for needed items for families who had sick children … really sick children. Where all the money raised actually went to help the people we said we wanted to help. Where thousands of dollars weren’t spent on decorations or table linens and huge amounts weren’t paid to expensive vendors – where everything was done by volunteers and people with huge hearts. The name came from, of course, Butterfly EB Children, but we felt that any child going through a life-threatening illness or event was fragile, too, just like a butterfly. The Butterfly Ball is a beautiful, sentimental event, with amazing food, live music, silent and live auctions and more! The first two years, we held a butterfly release. That was not only spectacular but also the sentiments behind it literally brought guests to tears. We honor two families each year, families who have a very heartfelt story to tell. All proceeds from The Butterfly Ball are given to families in need within a few months after the event, so the need to raise more funds each year is great. This includes supplies, medical needs, gas cards, food, clothing, transportation, canine companions, and so much more. The list truly is long, and the range of what we purchase and do for families is very, very wide.

Next week, we’ll continue our chat with Laurie as she shares what’s next to come for The Butterfly Fund and how others can get involved.

Sharing Our EB Family’s Story A Mother Reflects on Pregnancy & EB

Since we launched EB Resource, several families have shared their own personal stories about life with EB. This month, Sara Denslaw of Winter Garden, FL offers her thoughts on a subject we haven’t really talked about: experiencing pregnancy as an EB patient. Sara is very active in the EB community and an advocate for EB families in the Orlando area. She has EBS and has had four children – two children who are EB-free and two children with EB. After losing her baby son Garrett to the disease in 2004, she launched a blog (www.ingarrettsmemory.blogspot.com) to share newborn care tips and offer her support to other EB families.

EB Resource (EBR): Before you became pregnant, had you ever discussed with your doctor how having EB might impact your pregnancy?

Sara Denslaw (SD): No, my first OB hadn’t even heard of EB before.

EBR: When you did learn you were pregnant the first time, did you have any specific concerns or fears about what lay ahead?

SD: Not really. I just knew deep down I was having a girl and she’d have EB.

EBR: You’ve since had two children who do not have EB and two children who were diagnosed with EB, losing one of them, Garrett to the disease. As someone who has experienced both the joys and sadness of the experience, what advice can you offer to women with EB who may be contemplating the start of a family?

SD: It’s a personal decision. It’s a risk I am willing to take, but I do understand why others choose not to risk. I don’t think my life was any worse off because I had EB, and I didn’t think the lives of my children would be much different than mine was. We never expected to lose a child to complications of EB. But each time, I knew that even with the 50% risk of the baby being born with EB, there was also a 50% risk the baby would be just fine.

EBR: What kinds of challenges did you experience while pregnant or giving birth, if any?

SD: I much prefer a vaginal delivery over a c-section! The staples from the first C-section really did a number on my skin. Plus, the recovery time is much longer and harder. Don’t agree to a C-section unless you have another medical reason for one. A C-section involves a lot of tugging and pulling on your own skin along with the baby. I know it depends on the type of EB, but in my case, a vaginal delivery was much better for us. Sami came out with fewer wounds than Garrett and didn’t suffer airway issues from needing to be suctioned after delivery like some babies born via c-section.

EBR: Was there anything unexpected during the course of your pregnancies which you hadn’t anticipated that was a direct result of having EB?

SD: I didn’t expect my skin to get worse during the pregnancies. I blistered a lot more than normal, which I have heard is rare; as other women with EB had much better skin during pregnancy.

EBR: What would you like others to know beforehand about giving birth as someone with EB?

SD: Having EB is one thing, but caring for an EB baby is an entirely different experience! It wasn’t what I expected, but my daughter was much more severe than I was as an infant.

EBR: In your role as an EB patient advocate in the Florida area, do you have any advice or specific support resources, local or national, to suggest to new moms-to-be or moms with EB who’ve recently delivered?

SD: Just to connect with other women who have EB or other families who have children with EB. They are the ones who will truly understand it best.

EBR: And any specific caregiving tips that you’d like to share for moms of newborns with EB?

SD: My blog is dedicated to the care of a newborn with EB, http://ingarrettsmemory.blogspot.com.

EBR: What impact has getting involved in the community as an EB patient/family advocate had on your own perspective as a woman with EB and as a mom to a child with EB?

SD: I didn’t get as involved as I currently am until after Garrett died. My goal was to provide new parents with as much info as I could so that hopefully they didn’t have to suffer the same pain and heartache we did with losing a child. A lot of babies have been born since then; many have died. I never thought I’d stay as involved as I have for this long. I don’t like to be the center or attention, but I do know how much of an impact I have made upon new families and the EB community in general, and there is no way I could walk away from that now. If my experiences could somehow help others have a better life, then it’s worth it.

Sources:

In Garrett’s Memory

Related Posts:

Sharing Our EB Family’s Story, Part 1: Kathy Barnes
A Story We Must Share
Helpful Links for the EB Family

Sharing Our EB Family’s Story (Part 2 of 2)

Erik’s Story

Kathy Barnes, Mom to 6-year-old Erik, RDEB-HS

Last week, Maryland mom Kathy Barnes shared what it’s like to walk in the shoes of a mother and her child with EB, in this case, she and her son Erik. What she didn’t share then was that Erik’s condition came as no surprise to the family, who welcomed the baby into their home not as a natural-born son but as a foster child whom they later adopted. Kathy shares firsthand how they’ve learned to tackle EB every day together as a family. But first, she starts at the beginning of the story and what led to the family’s decision to embrace the new challenge of foster care.

I had finally reached the point in my life when I had finished the job of home schooling my three kids. I was thinking, "YES! Now I have the time to do what I want to do" and I had a list! It wasn’t long before God placed a burden on my heart that I needed to get a job.

I spent many days, it seemed scanning the want ads looking for the right job, but nothing struck my fancy. Finally there it was, a big ad expressing the great need for Medical Foster Care. I knew that was it! I circled it in red and wrote, "This is what I want to do!"

In what I now know was much faster time than usual we were through the process and licensed for medical foster care. I believe that God specifically had Erik in mind for us so our time of getting approved and licensed came as Erik needed a home.

When we were first told about Erik and his rare genetic skin condition, where he is missing the part of the skin that keeps it attached, (Recessive Dystrophic Epidermolysis Bullosa), I said, "I didn’t think we would take him,” because it sounded so severe and we wanted a child who would be able to participate in our family life. But they encouraged us to just come and meet him. Well, that is all it took. There was no way we could turn away this precious baby.

So after a month of traveling to Washington, D.C. to learn how to care of Erik’s specific needs, Erik came home to be a part of our family. It was instant love! He had lived in a hospital for the first nine months of his life and was delighted with seeing the world outside of the hospital.

On May 5, 2006, Erik officially became a part of our family when we adopted him. He is now a typical 6-year-old who loves to zoom around in his go-cart.

God has truly blessed us with Erik. He is an extraordinary child and deals amazingly well with the pain that is caused by his condition. Erik is such a blessing that we can’t imagine life without him. If it wasn’t for his bandages making his disorder obvious, you would never know by his behavior that he has anything wrong with him.

We have been working to make the last week in October Epidermolysis Awareness week in Maryland, and as a part of that effort "The Frederick News Post" came out to interview us. The reporter wrote an excellent article, which can be viewed online at http://www.fredericknewspost.com/sections/news/display.htm?StoryID=53554

Through awareness efforts, we are hoping to generate more funding for research as well as increased public awareness, which will hopefully decrease some of the rude comments we sometimes hear while out in public. I would much rather someone would outright ask me questions than to mumble comments about what they speculate must have happened to him as they pass by.

Epidermolysis Bullosa is so rare that it can be very difficult to find a doctor that is knowledgeable in treating the specific health needs of these patients. We have found a great deal of help chatting with others online who are dealing with Epidermolysis Bullosa. As a result of this connection and the newspaper article, we were asked if there was anything we needed for Erik, because a group of company executives in California were getting together to do a "Make a Wish" type of dinner specifically for people with Epidermolysis Bullosa. Immediately I knew what to ask for. I have been making Erik’s shoes because it is impossible to buy a pair that fits over his bandages and doesn’t cause more injury. The sewing machine I have been using is more than 40 years old and I nursed it, moaning and groaning, through the last pair. So I asked for a sewing machine, specifically the Bernina 440. Because as I had been looking, it was the only one that I found could satisfactorily sew through four layers of leather.

We were highly elated when we were called and informed that we were chosen by the company executive of Skechers, to receive our “wish.”

Anyway, here I am, a grandmother and starting a new family. It wasn’t exactly what I had planned, but I feel this is the ministry God has called me to. And even though it is sometimes an exhausting adventure, it is also a great blessing. I want to encourage others not to seek to fulfill their own desires but to ask God to give them an area of ministry. It may not be in foster care (though the need is great) but if you don’t feel called to something specific, ask God to show you the area of ministry to which he is calling you. Then pursue it! You will find yourself blessed beyond your imagination.

Sharing Our EB Family’s Story (Part 1 of 2)

Living with Recessive Dystrophic Epidermolysis Bullosa

Kathy Barnes, Mom to 6-year-old Erik, RDEB-HS

From time to time, we want to share some of the personal stories from some of our EB patients and their families who are a part of the EB Resource community – in their own words.

This week, we introduce part one of two from the Barnes family of Keymar, Maryland. Here, a mother challenges those who may not understand her child’s condition to an opportunity to learn about the pains, fears, frustrations and challenges experienced every day by a patient diagnosed with Recessive Dystrophic Epidermolysis Bullosa and his family.

Thank you, Kathy, for sharing your family’s story.

Just for a moment take a walk in my shoes, or better yet, take a walk in Erik’s shoes.

Try to imagine living a life where you have never known a day without pain. It is always there. Yet in the midst of a life filled with sometimes excruciating pain, lives a boy full of joy and the excitement of living. To see the smile on his face and watch him run and play, one would never guess the horrible, nagging pain that his bandages cover, pain that is a part of everything he is and does. He is determined to live and experience the wonder of being a little boy.

Erik is usually happy. But still lurking is the ever present pain and the realization that one small misstep or fall could create painful wounds that can take anywhere from a week to a year or more to heal. On top of all of this pain, other procedures lurk. Like today, I am in the waiting room while Erik has an esophageal dilatation in the operating room, so his throat doesn’t grow closed with scar tissue.

How does someone so tenderly young deal with a life of pain and fearful procedures? There are many days when the monster of pain and fear lurk underneath and make it difficult to deal with everyday life issues. Things become magnified and changes are difficult to deal with, whether he’s trying to get along with peers or like yesterday when he threw a cup across the room. How else is a 6-year-old who knows he is about to face another day in the operating room supposed to deal with things?

Walk a day in our shoes before you make a judgment or label him a bad boy. If you have some wonderful formula or advice to help a little boy deal with the monster in his life, because it is very real, share it. We are always willing to listen. But first, walk in our shoes.

Come walk in my shoes as a mother who wants to see her child live, have fun and experience the adventures that every little boy should, yet cringes as she watches, waiting for the next wound to happen.

Walk with me, as a loving mother cuts into blisters and cleans painful wounds in order to allow them to heal. Erik’s blisters have to be opened or they will continue to grow, making a larger more painful wound. I deal with it like a part of the normal routine and flow of life most of the time, but there are days I have to cry along with him and pray for healing, wishing that life could be more fair.

Yes, there are good days, when things aren’t so bad, but there are many days when even every step is painful, because of wounds on the bottom of Erik’s feet. Just think, could you walk in his shoes – full of pain and still be exuberant simply to be alive? Erik does. I would curl up in bed and not want to face the day if I had to live with the pain that he deals with on a daily basis.

So walk a day with me. See that I am not a special person; I am the same as any mother, loving her child and wanting the best for him. Erik is the champ. I am privileged and blessed to be his mother.

Sharing Our EB Family’s Story: A Different Kind of Isolation (Part 2 of 2), Jennifer Harbuck

Our conversation with Jennifer Harbuck continues about what life’s been like moving from childhood to adulthood with epidermolysis bullosa.

EB Resource (EBR): What kind of role did EB play as you were moving into the next phase of your life and trying to determine what you wanted to do for a living or what you might be interested in studying?

Jennifer Harbuck (JH): It didn’t play into it at all. I was not a very good student, because I had learning disabilities in math and grammar. I didn’t want to go to college after I graduated high school because I hated school. Ifelt I wasn’t good at it. First, I was shunned because I had health problems and second, I was shunned for not being any good at school. But I do like to write. I write poetry, short stories and essays. When I write it’s about 90 percent grammatically correct. I know in my head that something needs to be fixed and I’ll fix it. But give me a grammar test, and I will fail it, without a doubt. Despite my learning disabilities, I am pursuing a degree in child psychology and hope to one day be in a position where I can help other EB patients.

EBR: So if you had an aversion to grammar early on, how did you discover that you could write?

JH: Well, I was a very angry, depressed child. It just came out. When you have such issues that make you so very different than everybody else and you’re quiet, shy, introverted and without many friends, you fall into writing. Basically, you write because you’re so full of anger, bitterness and hurt, and you don’t know what to do. So you write about your feelings. Mine was poetry. It’s not like it rhymed or anything but it was poetry. When I was a teenager, I discovered science fiction and fantasy. I loved to read. I was reading at the age of five because it was a good escape from reality. My childhood was really traumatic. My father left our family because he could not handle my medical issues.

EBR: How old were you when you got married?

JH: 24 or 25. We were together for 14 years and married for 12 of them. I did everything I could to make it work.

EBR: Tell me about life now as an adult with EB. How has life changed as you’ve gotten older and living with the disease?

JH: I am extremely frustrated. As I mentioned, when I’m clothed, you cannot tell that I have this very rare genetic skin disorder so people look at me and go ‘oh there’s nothing wrong with her.’ I also have fibromyalgia and am not able to swallow pills because of my esophageal issues from EB. So I cannot take the proper medications to treat my fibromyalgia. I feel that I am not being properly cared for medically speaking because of the local medical community’s ignorance about EB. I have been more affected by the EB as an adult than I was as a child. Now I’m not being shunned by my friends rather but the medical community.

EBR: And this sounds like something that you’ve been experiencing for some time now…

JH: The last fifteen years or so. My plan is to move most likely to Cincinnati or somewhere close to it to be closer to knowledgeable EB doctors. I always felt I was special as a kid. I was shunned by everybody, but not by doctors or the nurses or anybody in the medical community. They made me feel very special because they didn’t know anything about EB back in the 70s, and they had a fairly healthy kid who had a really bad form of EB that didn’t look that bad, and I confused them. They studied me, and I was okay with that.

EBR: Because you felt you were helping others with EB, too?

JH: Right. I knew that the doctors saw treating me as a learning opportunity for them, and that made me feel good, and it also made me feel good about them because I knew they were doing everything they could with what they had to help me and other children like me. Now, 36 years later, I am disgusted with some of the medical community in this town that I live in and to be honest, in a lot of places because they won’t take the time to find out how to properly treat people with EB. I don’t feel special, I feel like a burden. My hope for other EB patients is that more people will share their stories because the more people who know about EB, the more people will talk about it. And eventually at some point that information will get to somebody who’s interested in the medical field who didn’t know about it before. The more awareness we spread, the more likely it is that people with resources will step up and offer more help for research and other forms of help for EB patients and their families.

Sharing Our EB Family’s Story: Growing Up with EB (Part 1 of 2), Jennifer Harbuck

This week, we’re continuing our series “Sharing Our EB Family’s Story,” this time with Jennifer Harbuck, a 36-year-old woman diagnosed as a baby with recessive dystrophic inversa, who shares her memories of growing up with Epidermolysis Bullosa and living with the disease as an adult. Harbuck lives in her hometown of Pensacola, Fla., where she is currently staying with a friend and her family after the exit of her husband four months ago.

EB Resource (EBR): Growing up, at what age did you realize you had different daily challenges than other children?

Jennifer Harbuck (JH): When you’re born with something, you don’t know anything else…I have always had the awareness that I had to be careful, because if I wasn’t, my skin would come off. I had to be careful about eating, swallowing, what I ate, how I ate it, the clothes I wore, the kinds of shoes. My mom didn’t restrict my activities in any way but I knew what would hurt me. I’d go outside and play with the kids and when I’d fall, I’d get really hurt, and that’s how I’d learn to be more careful next time.

EBR: When you were a child, did at any point any doctors take you aside and explain to you what EB was?

JH: I’m sure they did. I went to Chapel Hill every summer for three months from like age 1 or 2 until I was about 7. My dad was in the Air Force and got stationed in Raleigh, and that’s how my mom found out about the EB doctors at Chapel Hill. I was an inpatient at the hospital having dilations, blood work and skin biopsies, and being poked and prodded and being looked at. The only memory I can recall was that my mother was asking the doctor a question and he responded that it was really up to me because I knew my own limitations and he turned to me and said ‘you understand what you can and can’t do’ and I said ‘yes, I know.’ And that was it. He and my mother kept on talking, and I went and played over by the medicine cabinet.

EBR: So when you were in school, how did EB impact you?

JH: I am very lucky. I’m more internally affected than externally so it’s not as noticeable to others at first that I have anything at all. When I was younger, the bowel problems were really my biggest issue. I would go weeks at a time without going to the bathroom. I was always taking laxatives and stool softeners, and when you’re taking them all the time, they start working at the most inopportune moments. As a kid, you don’t have any control of where you are. I had a lot of accidents because I couldn’t get to the bathroom or because of the pain involved. I was constantly criticized and called a “baby” because of my accidents. That was very difficult to deal with because I had no control of it and nobody else could understand why. Everyone knew that I had health problems where I had to be careful with my skin, but other than that, they didn’t understand. They just thought I wasn’t potty-trained.

EBR: Were you able to make some kind of connections with a few close friends as a child?

JH: With other children who were also shunned because of their medical problems or learning disabilities. Also with children who had emotional or mental issues, because we were all considered outcasts as a result of our disabilities.

EBR: How old were you when you got to meet with someone else who had EB?

JH: I think I was 28 or 30.. I returned to Chapel Hill to get a skin biopsy, because the doctors here did not understand that I needed a skin biopsy to determine my sub-type. While I was there and waiting to be seen, I met up with a mother whose children had EB. That was the first time that I had any contact with a regular person who knew anything about EB besides a doctor. And just this past November, I met a young patient who had EB and it was the first time I had ever met someone else with EB.

EBR: What was it like talking with someone else who could relate to what you’d gone through years earlier?

JH: It was wonderful. It was great to meet with her, but I felt horrible for her position because she’s extremely affected, more than I’ve been affected. That’s what they said would happen to me, too. When I was born, they told my mom not to name me because I wasn’t going to make it through the night. This young girl’s much more mature than most girls at 14-years-old. I was, too.

EBR: I’d imagine she has much greater access to information now about EB than you did at 14. Do you think knowing more about EB when you were younger would have changed how you approached life?

JH: I don’t know if having more information would have made me feel better or look at life differently. In my mind, I was just a kid that had to be careful. I didn’t see my life as a bad life. I didn’t see EB as a horrible thing to have. I just had to be careful. If I fell, I’d be out of school for a week and have bandages everywhere. Did it keep me from doing what I wanted to do? Not really, not until I was 17 or 18.

EBR: What happened then?

JH: I joined track. I was the sprinter, high jumper and long jumper. I lived in New York City at that time and practiced in Central Park, and there it’s rough, gravely concrete. When I first joined, I put my all into it and went as fast as I could, but over time, I had two or three accidents over a two year involvement in track and my third year, I did not rejoin because I was not running as fast as I could have because I was scared I was going to fall. I’d be out of school for two weeks each time I fell…My mind would not allow me to run as fast as I knew I could because I was scared I would fall again, and that made me angry because I liked going fast. I had finally found something I was good at. The only other thing I felt I was good at was singing, which helped with the EB. Because my tongue is completely bound, I had to work really hard at word pronunciation in order to sing the words properly. It is because of singing that I am able to speak as clearly as I can. Also, singing helped brighten my world and truly brings me happiness.

In Part 2: Jennifer shares her perspective on living with EB as an adult and how different her interaction with the medical community has been compared to her experiences as a child.

Sharing Our EB Family’s Story: Meeting Bella for the First Time

Last year, in conjunction with launching this EB forum, we issued an invitation to those impacted by EB: to share their story to inspire, encourage or simply to educate others about the disease, whether from the perspective of parents, patients, caregivers, siblings or anyone else directly affected.

This month, one mother shares a day in the life since bringing home her second child, Bella, now seven months old.

As I prepared for the arrival of our second child, a sister to our daughter Alessandra (Ali) I had this nagging feeling that this baby would surprise us. As I was packing for the hospital, I chose some gender-neutral clothing in case she turned out to be a boy. The surprise she had in store for us was nothing I could have imagined. When Anabella (Bella) was born, the doctors said she had some skin missing from her leg. “That happens sometimes,” I think was what the anesthesiologist said. Her skin was also sloughing off her body as they handled her.  I remember the neonatologist telling me that he thought she had something called Epidermolysis Bullosa. (Eventually we learned she had Recessive Dystrophic EB). It was a genetic skin condition and they were taking her to the children’s hospital for evaluation and care. Later that evening, Bella suffered a seizure. We began to wonder just what was wrong with our little baby and if she would even make it through the rest of the night. About 36 hours after she was born, I finally got to see Bella. She was heavily sedated and covered with Aquaphor and bandages. But to me, she was just perfect.  We made it our mission to do whatever we could to give our child the best life possible.

After 12 days in the NICU, we brought Bella home. The hospital put us in touch with an EB Nurse Educator from DEBRA and she became our lifeline those first days after discharge. We learned that with EB, you often have to choose the lesser of two evils. For example, a pacifier gave her blisters in her mouth but she didn’t seem to mind.  She just wanted a way to soothe. We did wound care for approximately two hours every day. When Bella was about three weeks old, we received a visit from Leslie Rader, New Family Advocate from DEBRA. She observed our wound care, taught us some new techniques, and suggested trying to do bandage changes every other day. What a relief! That really reduced the stress on the whole family.

We’ve learned the most about how to care for Bella through families with kids with EB.  We learned about things like the ABC wrap to protect the hands and prevent the webbing between the fingers, how to stretch the use of our supplies, how to un-stick a stuck bandage, and the virtues of the G-tube.  One mom told me her daughter had the G-tube placed as a baby and she felt it was the best thing they did. She said to me, “You can tell the difference between EB kids with a G-tube, and those without.” That turned out to be a great testimonial because at four months of age, our GI doctor suggested a G-tube and we confidently agreed. There have been some who have questioned our decision to get the G-tube so early.  Our simple response: eating should not feel like torture.  We still offer Bella a bottle and if she can’t or won’t drink it, she gets her formula through her G-tube.  We were able to train her grandma and part-time day care giver to use it as well. It has made life easier all around, especially for Bella.

At seven months old, Bella is well above average in height and weight. She is behind developmentally on some of her fine and gross motor skills but she will begin receiving physical therapy to help her catch up. Socially she is above average, which is no surprise to us. Many have commented that Bella is indeed an “old soul.”

We hope and pray for the future, that Bella will have a chance at a “cure” or at least a more positive prognosis through a stem cell bone marrow transplant.  Some patients are showing great results but we know it is very risky.  We have already determined that Bella’s big sister is a perfect match for transplant.  Bella is young, so we don’t need to rush into the decision. But, we can’t help but think how nice it would be if Bella could look back years from now, and not have any memory of her life with EB.

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Sharing Our EB Family’s Story: Moving into Adulthood with EB (Part 2 of 2)

Sharing Our EB Family’s Story:
Moving into Adulthood with EB (Part 2 of 2)
Julieann Morabito

We continue with our interview with Julieann Morabito, who suffers from Recessive Dystrophic EB, and her personal story of living and growing into an adult with a disease widely unknown at the time and the complications that accompany it. For more from Julieann, in her own words, check out a piece she’s written that’s posted on DebRA. (http://www.debra.org/pdf/howdoyou.pdf). 

EBR: You mentioned that the physical demands of EB meant you had to abandon some of your professional aspirations but that you did finish earning a college degree. In what area of study?
JM: I have a Bachelor of Arts with a major in English and minor in Women’s Studies. I majored in writing and literature.

EBR: Have you been able to explore those interests professionally?
JM: After I graduated college, I worked for a direct marketing company as an assistant and copywriter for the advertising department. I also handled production and traffic. It was really hard to be in the corporate world and have a chronic illness. You’re an adult and you just don’t expect people to come up to you and say ‘what’s in your hands’ or ‘what’s wrong with you?’ You don’t think that’s going to happen, but it does and you have to be prepared for that answer. I struggled all the time as to what that answer should be.

EBR: How long were you able to work in the corporate world before you thought ‘I just can’t do this anymore?’
JM: I probably should have only done it for two years but I pushed through for five. I moved out of my parents’ home when I was 25, and I had my own place. By this time, I had left that first job and was at a medical communications company, and I loved it. I had domestic clients and international clients, all about pharmaceuticals and the health industry. So I loved it! But it killed me. I would literally take eight Motrin in a day just to suppress the pain and fever…I was bleeding so much, I was infected, I was anemic, but I was hiding it from everybody. I wasn’t letting anybody know that my skin was getting worse. As a consequence, I knew that there were other things going on, but I was not giving in. The first thing that I did to give in was tell my parents that I needed to move back home.

EBR: So what happened after you returned home?
JM: I moved back at 27 and lasted at work about another year. In April 2003, I went to the doctor on a Friday and she told me that I was going out on disability. And on that same exact date, I was supposed to get a promotion. I was so excited because I’d be making a whole lot more money and getting a better position, and I’d already signed off on everything about what my new position would be. I went to the doctor, and I never came back. 

EBR: And was something more serious going on with your health?
JM: After I was put on disability, she told me that I had to see my dermatologist and I didn’t want to do it because I knew it was not going to be a good outcome…I had tests done on my lymph nodes, and then when I went back to my primary care physician, they made me go right away to meet with an oncologist. Here I was still recovering from a previous surgery. I met the oncologist and she was very nice, but the first thing she wanted to do was give me a bone marrow aspiration, right then. I was not prepared for that kind of painful procedure.

EBR: And she did this on your first appointment with her?
JM: Very first appointment. Most people get admitted but she did it right there in her office. And from there, I had to meet a surgeon to perform a lymphendectomy…Luckily, it came back that I didn’t have cancer but that wasn’t the end of it. I then had a PET scan and pelvic ultrasound and at the same time, my hemoglobin is dropping and dropping. So that’s when I had to start getting blood transfusions. My whole life getting an IV in my arm had always been a problem. You cannot see a vein in most EB patients because of scar tissue. Then, they decided I’d have to get a Porta Cath, which is a little dicey, because it’s another spot where you can get an infection…It was a nightmare. Here I am, still only 28, and I’m still dreading the idea of getting a needle. They kept on having to re-poke me, because no one knows what EB is and nobody bothers to educate themselves no matter what kind of material you give to them before you meet with the doctor. They don’t care, they don’t read it. They just look at you like ‘what’s wrong with you’ because they have no idea what to do with you.

EBR: Have you seen in the last five or ten years any indication that the medical community is becoming more educated about EB?
JM: The only thing that I can say is that my primary care physician, my dermatologist and my pain management doctor, are wonderful. And my dermatologist specializes in EB but my primary care physician and pain management doctor, they’re not EB specialists at all. I’m the only EB patient they treat. But they try their hardest to take care of me and they’ll do anything for me. They step up…But whenever I have to go into the hospital, I know that I need to bring in my own supplies and my mom has to come in to do my dressings.

EBR: You mentioned earlier a wheelchair. Do you use one regularly?
JM: Whenever I need to go out. I’ve been in one for about six years. I can’t walk any kind of distance. It’s too painful and because I’m anemic and have asthma, I get out of breath easily… 

EBR: Are there any things you’ve learned along the way that you might be able to share with others about things they can do to help manage or treat the disease at home?
JM: When you find a caregiver that you feel comfortable with, who’s willing to invest their time to assist you with everything you have to do on a daily basis, whether it’s changing your dressings, getting dressed or taking a bath, always remember whenever you go into that situation: it’s not something that either one of you looks forward to so make where you do these things a comfortable place. Not in your bedroom, because that should remain a separate sanctified place for you where you can go to get away from it. Try to meditate, try to get a focal point. Always have some soft music or a cup of tea or a treat, something you really like, when you’re getting your dressings changed. Always allow yourself something that’s going to make you happy. Don’t just dwell or succumb to the routine of the situation…I’m not saying it’s going to be easy to do but it can be done.

EBR: Do you have any advice for parents of children with EB?
JM: I definitely think when your child tells you something, you need to listen to them. Don’t question why. Your child knows how they feel. There are going to be things they’ll have to go through. Some will be wonderful, and some will be not so wonderful. I know there is going to be a lot of moms out there reading this, and I don’t know exactly what I can tell them. I know that it’s a rough road ahead but their kid CAN go to school, and they ARE going to have friends, and they ARE going to be able to participate in extracurricular activities. Maybe it won’t be soccer or football, but it definitely could be photography or poetry or a school play. There’s something to look forward to for EVERY child.


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Sharing Our EB Family’s Story:Childhood & a Misunderstood Mystery Disease (Part 1 of 2)

Sharing Our EB Family’s Story:
Childhood & a Misunderstood Mystery Disease (Part 1 of 2)
Julieann Morabito 

Recently, we shared one of our own personal stories related to being a family faced with epidermolysis bullosa, and we asked those getting involved in this new EB community who were comfortable doing so, to share their own story. We’ve been encouraged at the response so far and will be highlighting these personal stories each month – both parents and patients dealing with EB and the repercussions of it on a daily basis.

This month, we want to introduce you to a very special young lady, Julieann Morabito of Hawthorne, New Jersey, as she shares what it was like for her and her family being a child growing up with recessive dystrophic EB in a time when even less was known on the subject. And later in the week, look for part two as Julieann talks about today and how living as an adult with EB has impacted her life.

EB Resource (EBR): Tell us a little bit about yourself. Do you come from a big family?

Julieann Morabito (JM): I’m 34 and the youngest of three children. I have an older brother and older sister. I was very unexpected. My mom had me when she was 38.

EBR: What was it like growing up with siblings while learning how to live with EB?
JM: It wasn’t lonely, because I always had my brother and sister around with their friends and I was always very close to them. My brother knew that I would never be able to go swimming in a public area because I had blisters everywhere, so when I was about five, he bought a pool for the backyard and I knew that I always had somewhere that I could go to have fun just like every other kid. I was still able to have that experience of being able to swim. Most kids don’t think anything of going to a pool party when they’re five. If I was invited to a pool party, I’d get hysterical and tell my mom to make up a lie and tell people we were going on vacation. I never wanted kids to see me like that.

EBR: So throughout your childhood growing up, the children you went to school with didn’t know that you were going through EB?
JM: No, they didn’t. Because I didn’t have EB on my face, no one ever knew that there was anything wrong with me, because I could hide behind my clothing. I still can hide behind my clothing today. It’s kind of a bittersweet thing, because yes, I am very sick but at the same time, you would never know it to look at me even though I’m bandaged from head to foot. I’m wearing clothes, so unless you looked at my hands, you’d never know it.

EBR: Tell me about growing up with EB in the early 80s when so little was known about the disease.
JM: Back then, there was no DebRA. There was no EBMRF. There was no research. I wasn’t even diagnosed when I was born. Whenever somebody touched me, I would get a huge blister. I didn’t open my eyes often because I had corneal abrasions. My mom took me to every doctor and dermatologist in the area trying to figure out what was wrong with her child. They didn’t know, and there was nothing to document that EB even existed.

EBR: So how old were you when you realized that you were going through different things on a day-to-day basis than other kids?
JM: I think when I was able to talk. I always knew that there was something different about me. My mom and my best friend’s mom were pregnant at the same time and were neighbors, and my best friend Michelle was born five days before I was. So growing up, my mom and Michelle’s mom took baby strolls together, they’d baby-sit each other’s children, so Michelle and I were always together. As I got older and we’d play together, I would notice that Michelle wasn’t getting corneal abrasions or Michelle wasn’t getting blisters. She’s still my best friend today. Even when we were in kindergarten and kids were making fun of me, I remember going to her and talking to her and crying, but I didn’t tell my family what was happening. I was a very sensitive little person.

EBR: I’m sure being a child trying to understand what was happening made it tougher, too. It’s hard enough just being a kid.
JM: Definitely. And when I was little, I had corneal abrasions all the time, no matter what was going on in my life. If it was the holidays, you knew I was going to get a corneal abrasion or fall and rip apart my hands. But as sick as I was, I had no fear. I was going to do anything and everything that every other kid could do. I’d jump off staircases or my bed with a cape because I thought I was Wonder Woman. And I knew that it would have consequences, but I didn’t really care. I think it was probably a good thing but my poor mother (laughs). I’m sure I drove her a little nuts.

EBR: It had to be so difficult for you and your mom not having any real guidance from medical professionals who at the time were unfamiliar with the disease or how to treat it.
JM: When I was 11 months old I was diagnosed by a dermatologist who basically told my mom, ‘this is what she has, good luck to you, go on your way, there’s nothing I can do for you.’

EBR: And he misdiagnosed you, right, as EB Simplex?
JM: Yes, that’s right. He misdiagnosed me as EB Simplex, but recessive dystrophic wasn’t even known about at that time.

EBR: When did you realize this is more severe than your family was originally led to believe?
JM: Probably about sixteen.

EBR: And did having that knowledge change the way you were treating it at all?
JM: I was sick with so many different things that we didn’t know were related to the EB at the time. When I was 16, I was very anemic and we didn’t know why. I was having strange things happening around my period. My skin wasn’t getting any better. I had really bad corneal abrasions. We didn’t put things together until I was 22. When I realized that all of the stuff happening to me was all linked to EB, I was freaked out. I screamed at my mom, ‘why didn’t you know, why didn’t you try to find out?’ I was really angry.

EBR: I would imagine you were really angry at the medical community too, for not being able to tell you more when you’d been seeking their help?
JM: I was, and I’m still angry. Anyone you speak to, anywhere you look, anything that you see in marketing has EB labeled as a child’s disease. Anything that you read has you dead at 18 because you’re going to succumb to Squamous Cell Carcinoma or you’re going to get septic from infection. The statistics aren’t out there for the people who don’t die, but they’re out there, people in their twenties and thirties battling the challenges of the secondary complications that come with EB every single day.

In Part 2: Julieann discusses life as an adult with EB and how it’s shaped her perspective on life, family and career.

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