We are the Usher Family! Our oldest daughter Amaya, now 8 1/2 years old, has a rare medical condition called Epidermolysis Bullosa, EB for short. This is a genetic disorder that she has had since birth. Children with this condition are known as butterfly children as their skin is as delicate as butterfly wings. Every day is filled with new challenges and hurdles but is also filled with laughter and joy that only Amaya can bring us. Throughout her short life she has had to endure more than most will in a lifetime. I did not realize until now that Amaya had started to feel isolated due to the special treatment she was receiving at school, at home and at social gatherings related to her condition.
This brings me to the reason I am asking for your help and support. Every other year, those with EB as well as their families, advocates, and care providers are invited to listen to and meet with members of the medical profession who have developed expertise in particular areas of EB care. In many cases, this may be the only opportunity for families with EB to interact directly with these experts. Most importantly, these conferences allow for those with EB to meet new families and reconnect with others from around the country that share similar circumstances as themselves. We have previously attended these conferences but did not attend the 2017 or 2018 due to limited resources. My husband and I both believe that in this stage of our daughter’s development that it is critical that we show our daughter support as a whole family, no special accommodations for her or her condition. I would like to attend this year’s Patient Care Conference with my husband, four children and my mother, who is Amaya’s primary caregiver. I am asking for help with airfare and hotel accommodations to make this trip possible. I appreciate you taking your time to read our story.
Sincerely, Nicole Usher, On behalf of The Usher Family
If you’d like to learn more about EB or the Patient Care Conference please visit: www.debra.org