Welcome to Hannah’s webpage. We are so excited to have this opportunity to share our story with our family and friends.
We have two goals with this website. The first is to inform those who may not be familiar with EB. The second is to eventually transition this website into a nonprofit fundraising opportunity. EB is a very costly medical condition. Many parents are not able to adequately support the financial obligations with this condition. Our hope is that once Hannah is cured and no longer needs extra financial support, we will be able to start helping other families with the expenses that plague EB parents. Some cannot afford wheelchairs, or travel costs for medical procedures and opportunities. Others simply cannot afford the routine medical costs that every child with EB incurs. Insurances are wonderful when you don’t really need them. But once you really need them, a lot of times, they seem to be unwilling to cover the most necessary treatments. I have become very discouraged with insurance companies, but that is for another website.
I hope that you find something in this website that you may not have known before, or just have a deeper understanding of this rare condition and the many facets of issues. Thank you for visiting us!