COTA for Rae

Our Story

As many of you know, Araeya has had a long and exhaustive medical history. Throughout it all, she has shown a strength and perseverance that is truly inspiring! For those that don’t know, here is just a brief summary: 

Unknowingly to us, she was born with a form of spina bifida called spina bifida occulta. This resulted in her spinal cord becoming tethered to her spinal column, which had to be surgically detached. That was just the beginning of her trials. 

Commonly she would complain about stomach discomfort. After many doctor visits, and lots of testing, they concluded that she had Celiacs and urged us to begin a gluten free diet. After changing our diet, and a few months later, the tests showed some improvement. Unfortunately, it was not as much as they would have liked. She was then tested for Crohn’s Disease. While the test came back negative, they told us to change to an even stricter diet. Rae continued to have chronic stomach pain, especially when eating. Soon, they asked us to place her in treatment for an eating disorder. They thought it may be psychological. After a short period of time, we pulled Araeya from that program as their diagnosis was completely off. Thanks to Nicole’s great motherly instincts, we kept pushing for answers. That is when genetic testing at Mayo found Rae has a rare genetic disorder called CTLA4 Haploinsufficiency. This disorder causes her immune system to be overactive, which ultimately leads to irritation and inflammation in the areas it focuses on. Her locations are primarily her digestive system and lungs.  

For several years, her IVIG therapy and Orencia injections helped control her immune system. Unfortunately, now that is no longer the case. She has now developed Interstitial Lung Disease (ILD), which is scarring of her lungs from inflammation, and 85% of her stomach has a form of pre-cancerous cell change called Metaplasia. All along, her medical team has said it’s best to treat the CTLA4, but when that is no longer possible, then bone marrow transplant (BMT) would be the best course. 

Araeya is currently set to begin her chemotherapy prior to the bone marrow transplant on January 10, 2026. The chemotherapy will destroy her current immune system. The BMT is set to take place January 22, 2026. If successful, the BMT will rebuild her immune system to mirror her donors. Ultimately, it is viewed as a cure for her CTLA4. However, the medical team does feel the ILD and metaplasia are irreversible. She will have to keep up on routine follow ups to ensure it does not progress further, even following the BMT. Thankfully, a successful BMT means the inflammation from her overactive immune system will no longer be there to cause further damage. This would be a huge win for Araeya and her long-term health!

Your donations to COTA for Rae will go a long way to assist with a lifetime of transplant-related expenses during the transplant, her long recovery time, and throughout her life as she maintains her routine check-ups and all the transplant-related expenses that may come up from those results. 

As always, we sincerely appreciate your prayers and emotional support for Araeya and our family throughout this journey!

Sincerely, 

Araeya Sell and Family

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.