Apr 29, 2020 Latest post:
May 25, 2021
Claire was just a mere 3 months old when we started realizing that something wasn’t right. Claire wasn’t eating very much, her skin would flare up in severe eczema, she went in and out of fevers and sicknesses every 2-3 weeks. The doctors tried putting bandaids on everything. We tried to take care of her skin. We tried every formula to make her belly feel better so she would eat more. We tried feeding her by a feeding tube, so she would just gain weight. We tried to keep her away from indoor play areas to prevent her “Colds” and fevers.
Her body rejected all of this. She would throw up if we we fed her by tube. She continued to poop frequently throughout the day with painful screams. Her skin still flared up...right about the time when she would spike a mysterious fever. It wasn’t until January 2020 that we finally got a colonoscopy that confirmed that she had an autoimmune disease called Inflammatory Bowel Disease (IBD). This is NOT irritable bowel syndrome (IBS). IBD is where your body’s immune system mistakes your bowels as something bad/foreign and starts attacking it.
The way that most IBD is managed is through medication. Claire has tried several medications that did nothing and she continued to decline with bloody stools, pushing so hard to poop that she would throw up, stopped eating, lethargic. We found out through genetic testing that she has a very rare form of IBD. Her immune system has a IL10R gene deficiency that is merciless and resistant to virtually all IBD medications. The only treatment shown to help claire is a Bone Marrow Transplant (BMT).
A BMT would replace her own immune system with a new immune system that wouldn’t attack her intestines. This is obviously not to be taken lightly, but unfortunately, she has little choice. If she continues down this IBD road, she will damage her colon until it will need to be removed, she will be in immense pain, and many kids like Claire actually develop lymphoma.
After much research, we have decided to have Claire’s BMT at CHOP in Philadelphia. They have a very specialized IBD program, top in the nation, and one of the top pediatric BMT programs. Claire’s BMT will be done with a donor off the national donor database. The actual IV infusion takes about 30 minutes to an hour for a toddler, but she will be on several hard hitting medications where she will be isolated in a hospital for 3-4 weeks.
As a family, we will continue to visit the clinic 2-3x week after her BMT and will be in self isolation (much like we all are already doing) for an entire YEAR! It takes about a year to build up her new immune system to a safe level.
You can follow Claire’s journey through getting a BMT in this caring bridge website to get update on her search for a donor, how she is thriving, and how she does post BMT.