Claire’s Story

Site created on April 29, 2020

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.

Newest Update

May 25, 2021

Journal entry by Claire Bear Howard —

It’s been a long time since our last update, but mostly because things have been going very well! Claire is now eating 100% by mouth and drinking about 50% of fluids. So, we hope this continues until she’s eating and drinking 100% by mouth and we can take the gtube out! She is asking for food and always wants what her toddler friends are eating. Haha! She has gained about a pound since last month and her hair is really coming in. She hasn’t had a relapse of her Cdiff since stopping her antibiotics in beginning of March. Fingers crossed.

Claire has been doing really well with the numbers from her blood work, meaning her immune system is doing great from the BMT. Her doctors even said it was time to get her port out. After the July appointment (1 year anniversary), she will do blood work every 3 months instead of monthly. 

Around the same time, her doctors said it’s time for the pediatric surgeon to fix some skin tags/anatomy on her private area. It really is uncomfortable for her and difficult to clean after going to the bathroom, so hopefully this surgery will help with both of those. Lucky for us, she can have the port removal and the “anoplasty” at the same time, so we do t have to go under anesthesia twice! Claire just had her surgeries this morning and all went very well! She doesn’t seem to be in any discomfort yet, but time will tell. We are driving back home now, and she’s acting silly and drunk and emotional. Lightweight 😂. 

Claire is super excited to be able to have play dates, go to soccer, go to music class, and will be starting preschool in the fall! She will get to go to the beach this summer, for the first time. She won’t stop talking about it.

We’ll update in a few more weeks after some surgery healing and when we are closer to her year anniversary!


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