Christmas Eve 2021 Koleson suffered from a 2+ hour long seizure causing damage to his brain and vital organs. He was admitted to Golisano's PICU fighting for his life. After days of treatment, testing and no progress being made, the doctors knew something serious was going on that they do not know about. We needed his genetic testing to be done. This was already in the works since he was born, but a full genetic work up takes months to be able to complete due to insurance. Since Koleson's current condition was labeled under life threatening, we were able to have rushed genetic testing results completed in January 2022. This is where we found out Koleson has TPK1 Thiamine Deficient Leigh Disease, a rare neurometabolic disorder that affects the central nervous system.

Koleson's Neurogenetic doctor actually told us this was a better type of Leigh Disease to have because treatment is flooding the body with thiamine vitamin. After weeks of being on 10+ medications (treatment plan) we still were not seeing any progress being made with Koleson. He was have 100+ subclinical seizures on the brain hourly, not tolerating feedings, very lethargic and barely conscious. His team through Strong were stumped. They are not metabolic specialist and were not sure how to help him. His neurogenetic doctor put in hours of work looking into treatment options, trying to find other cases and reaching out to other doctors. In the meantime, our plan was to put Koleson into a medically induced coma to help with the seizures and trauma happening to his brain.

The next day our neurogenetic doctor came in with a new treatment plan that needed to happen ASAP. This is when he spoke with Dr. Jamie Fraser at Children's National in D.C. She is the only genetic doctor known to us to have a medical case of a child with TPK1 Leigh Disease. She advised the best treatment needed was to start a ketogenetic diet via IV intralipids ASAP. We were rushed back down to the PICU to prep for this. The ketogenetic diet is a diet that kids needs to be hospitalized for over a 3 day period as you wean the child onto the diet and they are highly monitored during that time. Koleson did not have time. This was our last hope. They prepared us for the worst, that Koleson's body wouldn't tolerate the diet and that would cause other medical issues that they wouldn't be able to stop. We gave it to God that night, had him baptized and prayed this was our miracle answer. A miracle pulled through and now Koleson is almost two years old! This disease, especially Koleson's mutation of the genes being extremely rare, has no cure and his doctors are not sure how long treatment will work for him.

Either way, we choose to focus on the good and positive of Koleson's life. He is a strong, determined, fighter who will continue to beat the odds against him. We are very excited and thankful for the opportunity to be meeting and working with the team out in Children's National.

We thank all of you for your continued support in Koleson's Fight. It takes a village to raise a child and you are OUR village!

With love,

Dominique, Brady & Koleson Meakin

Green ribbon represents mitochondrial disease