Cillian’s Story

I wish Cillian could share his own feelings, but he is still so small. As his mom, I can tell you that he is one of the happiest souls I’ve ever known.

Cillian was born at 36 weeks and weighed just under five pounds. Shortly after birth, he failed a newborn screening and was placed in an isolator in the NICU. It was soon discovered that Cillian had no immune system. From May 2023 to February 2024, he underwent five different genetic tests, and the doctors eventually diagnosed him with Cartilage Hair Hypoplasia (CHH). This rare condition, caused by mutations in the RMRP gene, affects the immune system and impairs the growth of cartilage and bones. Cillian would need a bone marrow transplant.

Thankfully, Cillian received his transplant this summer. Just 17 days post-transplant, his immune system began showing signs of recovery. We are beyond grateful for our incredible care team who have been with us every step of the way.

We want Cillian to have the best life possible. We love him more than words can express and can’t wait to share the world with him!

Cillian’s Gallery