Hayden's first year of life, Hayden lives in constant pain & receiving new wounds by the day, from playing, walking & just drinking and eating some foods! Hayden fights daily for wound care products & meds, it's cruel!!🦋 #RDEB#HaydenStrong https://t.co/4trSLOKshe
Volunteers in Centralia, MO came out this Sunday to build a fence around the saltwater pool that was generously funded by Flat Branch Home Loans for the Esser Family. Thank you to all involved for supporting the EB Community! (via @KRCG13): https://t.co/h2k5D0jdTv
"It breaks my heart to know that there is so much money being spent on trivial, insignificant things, when there are children who know nothing but pain." - Sohana
Received Hayden’s AAC Device today which stands for Augmentative and alternative communication. It will help him be more verbal and better communicate with us and tell us what he wants… https://t.co/hCbS7qaowF
“He has his moments, but I’ll tell you what – no child in that position is weak. At all.��� – Nicole Esser, Hayden’s mom. ❤️
#CauseTheWave to #HealEB
https://t.co/xO7uSwHtJS https://t.co/xO7uSwHtJS
At present there is no cure or treatment that makes a significant difference to patients with EB. Treatment is limited to chronic wound care and pain control. There are however many Clinical Trials in the early stages which aim to improve quality of life https://t.co/8xrzkv4uM2
Today marks the 12th annual #RareDiseaseDay! We are grateful to all those who stand with the #EpidermolysisBullosa community as we push forward to improved care, treatments, and a cure. Together, #WeFightEB today and every day. Learn more: https://t.co/p0NrK9zIIa #ShowYourRare