I realized that right off the bat and accepted that.
I also realized that money, even though desperately needed in ALL cases to find a cure for any disease, isn’t the only thing that is needed. It all starts with awareness.
Think about it. You can’t expect people to just give money without them knowing why they should donate in the first place. Awareness leads to contribution. Contributions lead to research. Research leads to cures.
Knowing that, I realized early on that my place in this fight is to do whatever possible to make sure awareness is at the forefront – In my state, my networks and with all that will listen. Once I knew people would listen, I realized that I also have the power through storytelling and awareness to make things happen that will increase the quality of life for children and the families affected by EB.
If you are reading this story and are interested in becoming an EB advocate or looking to increase your advocacy role, I hope you take away this one thing: You won’t receive a ‘Yes’ unless you ask in the first place, no matter how unlikely you think it might be. And if you go in knowing that the worst that could happen is for them to say ‘No,’ and you accept that fact, then what’s the shame in trying?
And when your heart is on the line, and know it’s the right thing to do for these families, then you just take the risk and hope for the best. And go from there.
I started this journey as an EB advocate, when our great friends gave birth to a darling baby girl, Aubrey Joy Oberlin, on October 6, 2010. Perfect in every way, except she was missing the skin on her left foot and had a couple small blisters. I remember the call like it was yesterday. My husband received the call that night from our friends saying that sweet Aubrey had to be flown to UofM Mott Childrens’ Hospital to possibly get a skin graph for her foot. I went straight to Google and found that in rare cases of missing skin that it could be Epidermolysis Bullosa, and researching more on sites like ebnurse.org and other family blogs about EB, and hoped and prayed that night that it would be something different than what these stories were telling me. It can’t be EB. These stories are devastating.
As longtime friends, we had our whole futures planned out, this wasn’t in the plan. You can read my blog post here on I refuse EB about it HERE
But yes, it turned out that this wasn’t a nightmare but as real as it gets. Instead of feeling helpless and hopeless for our friends, or hiding in a corner not knowing what to say to them… I wanted to know in my heart that I was doing everything in my power that I could to help them in their time of need. If it was researching all I could about EB, being a spokesperson to friends and family online, posting and collecting updated needed supplies lists, or just coming over to help cut the linings out of Aubrey’s diapers, I wanted to make sure they knew they weren’t alone.
Our best friends’ daughter, Aubrey Joy Oberlin, was here for six short weeks. Those six weeks changed the lives of so many, especially our amazing friends Dave and Angie and Aubrey’s big brother Boden. Plus, everyone in both Dave and Angie’s immediate families, including Aubrey’s Grandma Sue who was with her for most of her life. And so, so many others. From great friends to Aubrey’s hundreds of online followers, her story captured many hearts and will forever be ingrained in our thoughts and prayers.
But as you know from this story, it didn’t end there for me. Seeing firsthand the devastation this disease caused our friends and their family, I knew that it was doing the same to other families out there too. The first story I read about when researching EB was Charlie Knuth. During Aubrey’s time here, Charlie was in the news for being denied health insurance coverage for a life-saving bone marrow transplant. I couldn’t believe what I was reading. Someone that suffers as much as these EB children, to be denied the only thing that can help protect them… I couldn’t believe it. And realized then that EB had to have more awareness desperately, because I felt so strongly that if the person that is denying them only sees what we have seen, then there is no way they wouldn’t be approved as fast as humanly possible.
That and other stories like this, made me realize that there is SO MUCH we can do for EB serving as an advocate for them, a storyteller – we just have to try.
We have to ask, knowing that the worst that can happen is for people to say no. And knowing how much you can help people when you receive that ‘YES.’
So I just keep asking.
From simple necessity items that were off of Aubrey’s needs list, to getting EB families free diapers, free aquaphor, or cases of formula from the manufacturers, to the donation, freight and installation of a commercial-grade tub for Seth and now Charlie, or a state-of-the-art walker for Jackson. Just ask, knowing that by doing so can improve the life of these families, if just a little bit.
And then keep pushing for more.
Our awareness crusade in Michigan started Aubrey’s Butterfly 5K for EB . Happily to state that in just two short years, we have raised well over $30,000 for EB research.
In family advocacy, Jackson (Jax) Baldwin’s family cry for help when being denied medical insurance coverage when notified that a bone marrow transplant was the only thing available to save his life, struck a cord in me like it did my VERY SPECIAL advocate sisters and in one short weekend, the ‘Save Jax Now’ campaign was born, in which we were determined to seek political and media attention in the state of New York, and it worked. Hundreds of letters were sent, news stories were told, and for the first time in history, NYS Medicaid approved the $1.5 million procedure… in less than a week, giving Jax a new chance at life.
But my point is to not point out my ‘Yes’s,’ in this journey for a cure, but to encourage others, as advocates, family members or friends of those effected every day with EB, to just go out on that limb, reach out and ask.
EB as a rare disease, I’ve noticed that you find yourself many times in uncharted territory. In most cases you are the first to ask, and find yourself explaining the EB story to them for the very first time. But I’ve learned that the story of these beautiful EB children once told, touches their heartstrings too. No matter how big the Company may be.
So be the storyteller, their advocate, and know by doing so, another check could be going to help a family in crisis, to sponsor that next EB event or to an EB organization, a politician could write that next woundcare bill, or advocate for another EB families insurance approval, a media spokesperson could write the next EB story that sparks thousands of more advocates, or you could without even knowing be reaching the next large funder for EB research, that will eventually lead to its cure. It all starts with ONE ask. Why not be the ONE to do so.