OGDEN — A fundraising event will be held Saturday at Weber State University on behalf of a West Haven youngster with a rare genetic disorder.
Kash Maughan, 4, has X-link myotubular myopathy, a condition that primarily affects muscles used for movement and occurs almost exclusively in males.
Kash was 2 months old when he was diagnosed.
Doctors told his parents, Eric and Debbie Maughan, that no child with the condition had lived past 6 months and the best thing to do was to take him home and make him as comfortable as possible.
“October came and went. That was the six-month mark,” Debbie Maughan said.
“Kash had outlived his death sentence. A couple weeks later, he started to swat at toys, and this is when they knew there was a little person in there who was a gift from God.”
Kash is almost 5 now, and he faces many challenges. He is unable to walk, talk or roll over and requires a ventilator to help him breathe. He receives nutrients through a device in his stomach. So far, he has had 17 surgeries, including nine in the last nine months.
Despite these challenges, he is like most other kids his age, said Amy Anderson, who is helping the family organize the fundraiser through Anything for a Friend.
Anything for a Friend is an organization that steps in to help people facing serious circumstances in their lives.
Money raised will be used for various things Kash needs that insurance will not cover. Included among those items is formula that costs $100 per can. Kash goes through 18 cans each month.
Benefit at WSU
A fundraiser to benefit Kash Maughan will be held from 5 p.m. to 9 p.m. Saturday in the Shepherd Union Ballroom at Weber State University. Included are a spaghetti dinner for $5, a kids’ corner with activities and prizes, a bake sale, live and silent auctions, a raffle and a balloon launch.