Help Hope Live for Tommy Shattuck

August 6, 2026

Tommy’s transplant was a complete success. Kayden’s cells were more than enough to help Tommy. He did face some challenges, including feeding and nutrition concerns that required a G-tube for over a year. We successfully navigated quarantine and all the medications. Every six months, we visit the Jimmy Fund clinic for monitoring, and his bone marrow transplant has been a resounding success. We’re seeing nothing but amazing lab results and happy doctors as we continue to monitor him. He’s living a completely normal life, just like any almost four-year-old. He has all the support he needs from a team in Boston, Maryland, and a full support system at his preschool and home. He also attends private physical therapy while also attending a preschool in the local school district that provides occupational therapy, physical therapy, an orientation and mobility specialist, a vision specialist, and a speech pathologist. While he’s a bit behind his age, that’s fully expected for a child who’s spent so much of his life in the hospital, sick, and quarantined from the world.

As Tommy’s journey unfolds, his ophthalmology report reveals a concerning diagnosis: 20/200 vision, confirming his legal blindness. To put this into perspective, a perfect vision score is 20/20, and in New Hampshire, a person is legally blind with a score of 20/40 or higher. While the doctor acknowledges the body’s ability to adapt, particularly in young children, and suggests Tommy’s vision might improve over time, the unique nature of each ocular albinism case makes predicting outcomes difficult. We explored the difference between Tommy’s apparent vision and his actual visual acuity, attributing it to his adaptability since birth. The doctor prescribed glasses to address his astigmatism, but it’s uncertain how much this will alleviate his vision concerns. These concerns may stem from either the astigmatism or the ocular albinism itself, which cannot be fully corrected with glasses.

Tommy’s transplant was a crucial part of his story, but Chediak-Higashi syndrome affects more than just his immune system. He’ll likely face ongoing visual challenges and may develop neurological deficits in his early adulthood that could affect him severely. Despite these challenges, we are so grateful for everyone’s support and donations during this journey.

June 27, 2023

Good morning everyone!! I have some good news!! Kayden’s test results came in and he does not have Chediak Higashi Syndrome AND he is not a carrier!!! This makes Kayden the perfect donor match for Tommy!! Thank you all so much for your prayers and your donations and support!!❤️❤️❤️ Your prayers are working!!