Big 5K walk/run planned May 21 to support Koleson Meakin and his family

Provided photos: Brady and Dominique Meakin of Medina hold their son Koleson, who was born with a rare genetic disease called TPK1 Leigh disease. A 5K walk/run on May 21 at Junior Wilson Club will benefit the family.

MEDINA – The family of a Medina child born with a rare genetic disease will benefit from a 5K walk/run scheduled May 21 at Junior Wilson Club.

Michelle Sidari, daughter-in-law of Medina Mayor Mike Sidari, and her husband Joe live in Farmington, where she has organized several previous 5K runs to benefit charity. A senior sales director with Mary Kay, Michelle has become an ambassador for fighting domestic violence and cancer in women.

“Every year, I donate to the Mary Kay Ash Foundation, but after learning about the Meakin family in Medina, I wanted to help them, and decided to have this event in Medina,” Michelle said.

Brady and Dominique Meakin’s 8-month-old son Koleson has been diagnosed with TPK1 Leigh Disease.

When Dominique was eight months pregnant, an ultrasound revealed Koleson’s brain ventricles were enlarged.

“Doctors told us he would have this disease and there was nothing we could do about it,” Dominique said. “In three months he was diagnosed with a different disease. On Christmas Eve he had a prolonged seizure and spent five weeks in the hospital.”

This was when they did gene testing and determined he had this disease so rare there were few known cases. In fact, there was only one in the world with the severity of Koleson’s. He now survives with a feeding tube.

Koleson Meakin is shown in this Easter photo taken by his family.

Brady and Dominique were told they were both carriers of the gene mutation which caused Koleson’s disease. They have a 25 percent chance, if they get pregnant again, that baby would also have the disease. Their only hope would be invitro fertilization, so every embryo could be genetically tested.

“This would be an out-of-pocket expense for us,” Dominique said.

Dominique said they met Michelle through Mary Kay.

“We are so thankful she thought of us,” Dominique said. “The community supporting us is how we are able to take care of Koleson. We hope his case will make a difference, and doctors can learn how to help other children.”

The walk/run on May 21 will begin with sign in at 9 a.m., followed by the start of the race at 10 a.m. Participants are urged to register by May 1 in order to be eligible for a T-shirt. Registration is $30 with a shirt and $20 without one. A limited number of shirts will be available on a first-come basis for those who register after May 1.

Michelle’s goal is to have 750 participants.

She is also seeking sponsors and donations for a basket raffle that day. Anyone wishing to donate toward the race or raffle can bring donations to Junior Wilson Club on Bates Road between 6 and 9 p.m. May 20.

“As a special touch for the family, anyone who would like can bring a gift for baby Koleson or the family either on Friday night or the day of the race,” Michelle said.

Suggested items are books, adaptive clothing (6 to 9 months) huggies/pampers (size 4 and up), wipes for sensitive skin, gas cards for doctors appointments, dish soap, toilet paper, paper towels, laundry soap or tissues.

Any business who would like to make a $100 donation will receive their name on the back of the T-shirts. Donations may also be made through Venmo to @TheMedina5K, by calling Michelle at (716) 450-1572 or e-mailing sidarimkoffice@gmail.com.

Michelle said as an ambassador for the Mary Kay Ash Foundation it is her job to spread the word and raise awareness about this organization and the amazing work it does in the community. She said the Mary Kay Ash Foundation donates money to help fight domestic violence by awarding grants to domestic shelters every year, and if anyone knows of a local shelter in their area who would like to be considered for a grant, they should contact her at (716) 450-1572 and she will write a letter of recommendation to accompany the grant application. The Foundation also donates to doctors and researchers in an effort to find a cure for cancers affecting women, Michelle said.

There is also a Cruisin’ for Koleson car show and basket raffle from 9 a.m. to 4 p.m. on May 28 at the Orleans County 4-H Fairgrounds in Knowlesville. There will be food vendors and live music.