It has been called the worst disease you’ve never heard of.  I would like to shed some light on an illness that has touched my family in hopes to raise awareness and support, but perhaps I can accomplish more than even this.  Perhaps I can tell a story that might move the Collective, elevate it to a higher plane of compassion, of grace.  It is certainly worth a shot…

EB—or Epidermolysis Bullosa—is devastating, and currently without a cure.

     An individual with EB lacks a critical protein that binds the layers of skin together.  Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal.  EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs.  EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer.  It is estimated that EB affects at least one in every 20,000 births.  EB is not specific to any ethnicity or gender.  Given that EB affects only 30,000 people in the US, advancing this research relies on the generosity of individuals and corporations. – ebresearch.org

     Meet Lane.  He is fifteen months old.  Brittany Weingart is his courageous mother.  She is my second cousin, and this is their story.

     “Lane got his first blister at not even a day old.  He wasn’t diagnosed with EB until the age of 9 months.  For nine months we watched Lane grow and continue to get blisters, and not knowing exactly what he had was very scary for us.” – B.W.

Doctors struggled with the diagnosis of Lane’s condition.  They needed a genetic blood test that their Insurance refused to cover, so after they were able to raise the $3000.00 for the test, it was confirmed that Lane did in fact have EB.

Skin is the body’s largest organ, so to say that EB impacts every aspect of an individual’s life is a gross understatement.

Among its most important functions, skin is the first line of defense to protect the body from trauma and infection. Everything we do in life impacts our skin – walking, eating, playing, sitting, writing, hugging, sleeping – the list goes on.  Children with EB are often born missing large areas of skin leaving gaping wounds that never heal; walking and standing are impaired over time because their toes become fused from repeated injury; the simple joy of holding a crayon to draw becomes impossible because their fingers fuse and contract, turning their young hands into mittens.  – ebreaseach.org

     “Everyday with Lane is different.  You never know what to expect.  He could go to bed with no or very few blisters and wake up and be covered.” -B.W.  

During a typical day, an individual with EB undergoes a painful bath and bandage change.  Given the large areas of skin that can be missing, bathing can be a long and excruciating process.  Bandage changes can last anywhere from 30 minutes to several hours and bandages can cost a family as much as $14,000 per month.  – ebresearch.org

     “Lane is just like any other 1yr. old except for his blisters and the fact that he must be covered up sometimes.  On a very bad day Lane is completely wrapped in bandages.  To do this we have to pop every blister, coat him in vaseline and use special wrap to keep his skin and the blister(s) protected from more rubbing and/or infection.” – B.W.     

For a child with EB, the joyful act of participating in sports – such as Little League or youth soccer – is often out of the question due to the skin tears, blisters and scarring that would result.  Falling down on the playground can remove all the skin from their little palms or produce blisters on their knees the size of oranges.  Simply put, EB often prevents a child from just being a child.  – ebresearch.org

     “He is currently almost 15 months old and still not walking because his worst areas right now are his feet.  He has four different ways that he crawls depending upon where and how severe his blisters are in certain areas.” -B.W.

We are committed to advancing treatments and finding a cure so that children with EB can grow up to live full, pain-free lives. – EB Research Partnership

     I have used words from the EB Research website and Brittany, herself, because I am far from being an expert on the illness, nor do I have any idea what it would be like to even have a child – let alone a child with EB.  I cannot imagine the endless heartbreak that parents of a ‘butterfly baby’ (their nickname for having such delicate skin) must experience on a daily basis.  The joy of waking each day to your brand new baby is tinged with fear in anticipation of what might be.  Perhaps it’s the sweet little palm of their hand or their tiny foot, or worse.  No, I could never know what Brittany’s life must be like – the deep pain that she must feel just knowing that her little one’s pain is so tremendous, so constant.  I imagine that she would do anything to alleviate it – anything.

A few months ago, my mom asked me to run the NYC Half Marathon for Team EB and raise funds for the research needed to find a cure.  Friends, I am ashamed of my initial reaction.  I thought of how I hadn’t really healed from my past running injuries enough to train and complete a half marathon.  I hated the thought of asking people for money – everyone was asking people for money.  Then one morning I woke up.  It was literally an awakening.  I knew that from this point on my life needed to be for something else – something bigger.  Up until this moment of revelation it had all been mostly about ME, and frankly, I was tired of myself.  My first thought was of this race and of Brittany and her baby boy.  I had to run.  This little guy has taught himself how to crawl four different ways to compensate for his injuries, and I, being an avid and able long-distance runner, couldn’t get over my ‘injuries’?!  I laughed at myself, at my ridiculousness, my selfishness.  And well, people were going to have to get over it – I am asking.  They can give or not, but the fact that little ol’ me could generate some kind of positive impact on an illness that is so very close to a cure that could save the lives of tiny, innocent babies – of my cousin’s baby – a cure that could ease their immense pain, completely blew my mind.  I had to ask.

       And I have.  And it has not been easy.  I do understand.  There are so many noble causes and so many organizations needing financial support, and where do you draw the line?  I’m writing this now to say that you never draw the line.  Give.  Give until it hurts.  It will always come back to you.  The universe can be a rewarding place.  Plant a positive seed and you shall reap a positive crop, I can promise you that!  There was a point in my fundraising where I felt discouraged.  My faith in humanity was waning.  But little by little I became overwhelmed by the generosity of these beautiful individuals whom chose to give.  Angels!  When any single person gave any amount, I would break into tears!  It seemed a miracle each time and I was so moved!  Its been an extremely enlightening and uplifting experience and I am so, so happy to say that I have now reached my goal of $1500.00!  The race is now seven weeks away.  Friends, I want to raise more.  More money and more awareness.

I invite you to my fundraising website where you can learn more about EB and make a donation.  Simply click here .  My dear reader it is my honor to run for our butterfly baby, Lane.  This little one has taught me so very much about myself and people and life!  Sweet baby Lane has no idea of the power he already holds!  My hope is that his story has inspired you just as much as it has me.  This beautiful baby boy smiles so much that if it weren’t for his blisters or his bandages, you would never know of his condition.  Little Lane, I can’t wait to run for you – for your big blue eyes and curly blonde hair, for your infectious smile that lights up a room.  Each step dedicated to you, darling, and to all of the other butterfly babies and their families, and to the amazing individuals who have supported this cause.  My endless gratitude.  And thank you Brittany, for sharing your story.  You are a soldier yourself, and the strength you possess is an inspiration.  I am so proud of you.

“Nothing stops him and nothing ever will.  He is such a smart and tough little guy who is just going to get smarter and tougher in life.” – Brittany Weingart

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