Support Trey’s Therapy, Equipment, & Medical Fund

Our sweet Trey is 3 years old and was born with a nano-rare genetic mutation called CACNA1A. This mutation is "de novo", meaning it didn't come from Eric or I, and Trey is the first one in our family and only one of a couple hundred documented cases in the world. He truly is one in a million!

He is physically disabled and has minimal expressive language. We are hopeful that he will learn to walk and talk one day! He is currently practicing standing and walking with the support of ankle/foot orthotics (AFOs) and a Rifton gait trainer. Soon we hope to be able to start working on communicating with an AAC device. We look forward to the day that Trey will hopefully take unsupported steps and not have to get around solely using a wheelchair. He received a donation of a GoBro from The Frog Foundation and is excited about his newly discovered independence. Unfortunately, since he was born with this mutation and there is no cure, we are likely looking at a lifetime of medical complexity and uncertainty. As he grows, we are in need of new equipment that fits his body and will be aging out of NJ Early Intervention this summer -- a lifeline to our family since he was 6 months old. We are seeking financial support from anyone who would be willing, to lessen the burden on our family.

On October 11th, 2023, Trey was accurately diagnosed with CACNA1A after genetic testing, after previously being diagnosed with Cerebral Palsy. CACNA1A affects the calcium channels in the brain and Trey is also missing his left 6th cranial nerve. Trey’s CACNA1A related disorders include eye movement disorders called paroxysmal tonic upgaze and esotropia (we are currently patching his right eye to build the muscles on the left), hypotonia (low muscle tone), dystonia (muscle contractions), and ataxia (impaired balance and coordination). He has also been diagnosed with Global Developmental Delay but is making progress through Early Intervention. He is currently in physical therapy, occupational therapy, speech therapy, vision therapy and developmental intervention. Soon, Trey will hopefully transfer to a school for disabled children. We are so grateful for our medical and therapy tribe that has worked so hard to support Trey (and our family!) to where he is today. We couldn’t have done it without you. ♥️

You can learn more at www.CACNA1A.org.

Trey is the light of our family. He is the happiest boy and his smile is contagious. He has a long road ahead but in just 2 and a half years we have experienced how incredibly strong he is. He works really hard to do things that come naturally to most of us. We truly appreciate any and all donations, no matter how small. Funds will be used directly to pay for Trey’s equipment, therapies and medical bills. Your kind generosity will make a huge difference in his life!

With gratitude,

Trey, Kristi, Eric, + Stella