Fundraiser being held for local girl battling terminal illness

Olivia LeMaire is 1 of 26 people in the world to be diagnosed with the rare and terminal disease Infantile Neuroaxonal Dystrophy, commonly known as iNAD.

Leslie LeMaire, Olivia’s mother, says, “Around 18 months of age Olivia started to fall quite frequently. We took her to doctors and they could not figure out what it was.”

The axons on Olivia’s brain are being blocked by lipids, which is why those axons can’t send commands from her brain to rest of her body. The life expectancy for victims of iNAD is between five to ten years. Although this disease is terminal, little Olivia continues to fight.

Leslie says, “The other day for the first time in over a year she sat up independently for five minutes. We were very excited! She’s been babbling a lot. She had lost that ability.”

Michael LeMaire, Olivia’s father, says, “Kids who have this disease, when they lose a certain function, they don’t get it back. So, for her to come back and be able to sit up on her own is amazing.”

Leslie and Michael LeMaire belong to a support group for parents with children suffering from iNAD. They were recently approached by a researcher working on a medication that may stop the progression of the disease.

The LeMaires will be raising the money for the research by way of a 5K run, a one mile walk and Easter parade for the children at Turnley Park in Kaplan. The event will take place on April 4 with registration for the 5K starting at 8 am and the race starting at 9 am. Attendees are asked to decorate wagons, strollers and kid’s bikes for the Easter parade because prizes will be awarded.

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