Western battalion firefighters will do boot drive on Sunday for Make-A-Wish

Medina family went to Disney World in January through Make-A-Wish

Photos courtesy of Meakin family: Koleson Meakin, now age 4, went to Disney World in January for a week with his family. Koleson is diagnosed with TPK1 Thiamine Deficient Leigh syndrome, a rare genetic metabolic disease. His parents, Brady and Dominique Meakin, navigate his complex needs, which require a special ketogenic diet and frequent medical care.

MEDINA – Firefighters from the western battalion in Orleans County will be out this Sunday filling the boot for the Make-A-Wish Foundation.

Firefighters have been doing this for several years. This tike has special significance because a local boy and his family were able to go to Disney World through Make-A-Wish.

Koleson is shown at Disney World in January with his parents, Brady and Dominique, and younger sister, Jovie.

Koleson Meakin turned 4 on Aug. 31. He has a rare condition, TPK1 Thiamine Deficient Leigh syndrome. It is a gene-linked brain malformation characterized by the absence of normal folds in the cerebral cortex and an abnormally small head.

His parents, Brady and Dominique Meakin, navigate his complex needs, which require a special ketogenic diet and frequent medical care. Koleson has been hospitalized four times since May.

His mother said the family is grateful for the community’s support through fundraisers and prayers.

“We’re making him comfortable and trying to make as many memories as possible,” she said by phone this morning.

Koleson has a strong and committed care team.

Make-A-Wish gave him an expedited wish about a year ago. He loves lights and music, and Make-A-Wish suggested Disney World. His parents drove Koleson and his little sister Jovie down last January and they were able to stay for a week in a village on site for Make-A-Wish families..

“Our family was treated like royalty at Disney village,” Mrs. Meakin said. “That was the best week of our lives. It is a core memory we will never forget.”

The boot drive will be from 9 a.m. to noon on Sunday at on Route 63 with Shelby and East Shelby firefighters, Maple Ridge Road and the downtown intersection with Medina firefighters, and South Lyndonville Road and Route 104 with Lyndonville and Ridgeway firefighters. The local drive usually raises about $8,000.