Benefits: "I Refuse EB" Fund for Epidermolysis Bullosa Research
Goal $ 10,000.00
11.16% towards our goal
DONOR LIST
Anonymous
$ 45.00
Randon & Brooke Carter
$ 50.00
Sending love ❤️
Anonymous
$ 10.00
Anne
$ 50.00
Hoping that a cure is found for this disease
Madge
$ 150.00
Cara Jordan
$ 20.00
Anonymous
$ 50.00
Anonymous
$ 100.00
Anonymous
$ 100.00
Anonymous
$ 90.00
Anonymous
$ 50.00
Anonymous
$ 320.00
Anonymous
$ 23.45
Carrie Lee
$ 37.88
[Stop]
$ 1,116.33 raised
Give Now Create your own page

Eli Francis Monnier was born on August 8, 2015 to Alex and Lindsay Monnier after 7 years of heartache including the stillbirth of their first daughter, 3 miscarriages, and a failed IVF cycle. Eli was concieved through donor eggs from Lindsay's sister who wanted nothing more than to give Lindsay and Alex a healthy baby. Lindsay's pregnancy had some challenges but Eli kept proving that he was made to be in this world. Lindsay would say the 9 months she was pregnant with Eli were the happiest 9 months of her life. When Eli was born missing nearly all of the skin on both of his feet and his skin tore off his right hand when he was cleaned after he was delivered via c-section, Alex and Lindsay's world turned upside down again. "Epidermolysis Bullosa" was the unofficial diagnosis but they had never heard of it before. They immediately started researching and learned their brand new precious son that was so graciously gifted to them may not live to see adulthood, and if he did he would likely be severly disfigured and suffer excrutiating pain from wounds comparable to 3rd degree burns that would cover his body. In addition to that, they learned he may never eat by mouth, could have serious damage to hia internal organs, and may never walk. After spending 3 weeks in the NICU, Eli proved he would eat by mouth! Alex and Lindsay learned how to bandage his wounds and how to deilicately handle him to prevent new wounds. After going home with his parents, Eli continued to make strides in his development and suprises his mom and dad constantly with how resilient and smart he is. Eli is now almost 2 years old, loves to make people laugh, doesnt know a stranger, is strong and determined when he wants something, and is working on eating "big people" foods and walking! His feet remain his most challenging area to heal and his toes have started to fuse as a result. Eli recently participated in a clinical trial at USC which did ahow promising results...and increase in his Collagen VII from 0% to 32% in his treated wound sites. However, the treatment doesnt take away all that EB is and does to Eli's body. His parents want to help Dr. Tolar at The University of MN to cure EB with Genome Editing. Dr. Tolar is in need of funding to create a clinical trial, including hire a competent staff to run the trial. This fundraising page will benefit Dr. Tolar's Genome Editing trial which is the only potential CURE for EB!

Help spread the word

Please help us and let your friends, colleagues and followers know about our page: