Baby Eli's EB Fight
This fund is being set up to help Baby Eli and his fight against EB. Many people have asked us (Alex's family) how they can help, which is why this page has been created.
What is EB you ask? Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™
Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available. (See more at: http://www.debra.org)
Below is taken from Alex & Lindsay's Baby Quest Facebook Page, which you can follow at: Alex & Lindsay's Baby Quest
"Eli Francis Monnier was born on Saturday, August 8th at 9:32pm via c-section weighing in at 7lbs 14oz. 21 inches long.
After he was born he was taken to the NICU due to having some open sores on his hands, feet, and inside of his mouth. He has remained in the NICU for wound care. Dr's currently believe Eli has a rare skin condition called Epidermylosis Bullosa where he does not have the proper protein to bind his layers of skin together and causes blisters to form on various parts of the body. The severity of his disease will be known after the genetic testing is back.
Eli is overall a very content and healthy baby. He has taken his wound dressing changes like a champ. He LOVES being held skin to skin.
The biggest concerns at this point is getting his skin to heal and getting him to eat. Because of the sores in his mouth he is not eating well and has an IV through his umbilical cord to get fluids and nutrients.
We just ask for continued support an prayers for me and Eli's physical healing and daddy's emotional healing. Eli is certainly a miracle baby and I'm just so happy that he made it out of me alive and can't believe how beautiful he is! Things aren't the way we hoped it was going to be since he will remain in the NICU after I'm discharged ( we wish more than anything that he could go home with us but this is just one more mountain we will conquer together with all of your amazing support!"
Any support will be greatly appreciated and will help in traveling expenses and Eli's medical care. The McEldowney and Monnier families are grateful for the outpouring of love and support!
--- For the people who would like to donate, but not through gofundme, donations will be accepted by mail as well at:
Center for Personal Wellness
96 W Fourth St.
Minster, OH 45865
Also, a list of necessary items to assist in Eli's care is being made. This list can be found here: http://amzn.com/w/2BI1U0F811KOF
Clothes that has been suggested for EB babies:
- Kickee Pants
- Hanna Andersson
- Burt's Bees Baby