Family uses social media to bring awareness to infant’s rare condition
May is the start of National Mobility Awareness Month, which has quickly become an important month for an Indianapolis family who has a child with a disability. The Darst family is trying to bring awareness about their daily struggle and highlight the need for hope on social media sites like Facebook.
The information is coming from nonprofit National Mobility Equipment Dealers Association, which is also behind an online contest. The prizes are specialized vans, and the Darst’s are in the running.
“It’s a lot different. I had to quit work,” said Amber Darst, 7-month-old Colton’s mother.
Colton has a rare condition characterized by stiff joints and abnormally developed muscles. The cause is unknown.
“They told us he has Arthrogryposis, and it took us probably a week to figure out how to pronounce it,” said Michael Darst, Colton’s father.
His parents try to keep it light to combat the added stress of intense, around the clock care, multiple surgeries, casts and therapy -which together could give the little boy the ability to walk and perhaps use his hands.
“He may never be able to hold someone’s hand and experience what it’s like to hold someone’s hand,” said Michael.
But to keep their costly medical bills from piling up any further, the family must drive to a hospital in Lexington, Ky., which can get tricky. Their van doesn’t have air-conditioning but it does have a broken window and fuel gauge, among other problems.
“His legs stick out past his car seat with the casts, but these seats don’t recline,” Michael said.
The Darst family said even if they do not win the contest, they are grateful for a happy son.
“Just being able to see someone that may not be able to use his hands and his legs and is still so happy, it makes us appreciate everything,” said Amber Darst.
Colton will undergo two more surgeries this year. The second one will leave him in a full body cast.