Mom struggles to find transportation for son with rare brain dis - NBC12 - WWBT - Richmond, VA News On Your Side

Mom struggles to find transportation for son with rare brain disease

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RICHMOND, VA (WWBT) -

For 18 years, a mother has been struggling with transportation for her son, making the endless visits to a doctor an even harder task.

One in 2,500 are born with Dandy-Walker Syndrome, which may sound like a rare disease, but for the parents of children with the syndrome, "that's a lot when your kid's the 'One.'"

That is what the Dandy-Walker Alliance points out, describing the syndrome as a congenital brain malformation involving the cerebellum and the fluid filled spaces around it.

"The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull," states Dandy-Walker.org.

For one Central Virginia mother, it has caused her son to live his life in a wheel-chair. As she struggles to lift him into her family car, she is also struggling with finding a handicap-accessible van.

"It is hard, it’s a lot. I’m not a complainer, but he’s getting older and this is one of my biggest concerns is being able to transport him easily, more comfortable for both of us," expressed Tashieka Wilson, as she sat next to her son, Jacary.

He is unable to talk and unable to walk, and Wilson, a single mom, is unable to work in order to take care of her son.

"Sometimes, I just like to take him to the mall so he can get out of the house," she explained.

But getting out of the house is an ordeal. She has to lift her adult son into his wheelchair, then uses a harness to make sure he can’t fall out. They then work their way through the home, down an old ramp, to the family car. She then has to lift him back up and into the backseat before breaking down the wheelchair piece by piece.

"I just do it…the best I know how," she expressed.

She is working with the school on a transportation plan to get Jacary to and from his classes. Come June, he’ll no longer be a student, making the family’s vehicle even more important.

Click here if you are interested in helping the family.

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