WILMINGTON -- A Wilmington girl with a rare form of dwarfism called Cockayne Syndrome is getting a dream come true. She and her family are off on a special vacation thanks to the Make a Wish foundation.
It's not often the Read family gets to go on vacation. But thanks to the Make a Wish foundation Kelly, Mitch, Makayla and Kylie are headed to visit Disney World.
Kelly and Mitch's eldest daughter Makayla has Cockayne Syndrome, a rare genetic form of dwarfism.
Kelly Read said, "We're both carriers of a recessive gene and so the odds are just slim to none."
One in 250,000 to be exact, and there is no known way of testing for the gene before pregnancy.
Kelly and Mitch say when Makayla was born the doctor told them she had a small head circumference. Later, the doctor sent them to geneticists.
Makayla had a number of health problems including eye problems that required two cataract surgeries before she was two months old.
"She's had the lenses removed from her eyes and she wears contact lenses and glasses," Mrs. Read said.
Doctors recommended they research Cockayne Syndrome.
"We knew immediately the kids just all look so much alike that as soon as we got online and found pictures of kids we knew," Mrs. Read said.
Raising a child with a disability is a challenge for the reeds both financially and emotionally. Makayla is fed through a feeding tube, and requires a home health aid during the day while Kelly and Mitch are at work. This includes physical and occupational therapy, and vision services.
The Reads say it's hard raising a child that's different.
The normal life span of a child with Cockayne Syndrome is between four and six years. Makayla is four. The Reads say Makayla is healthy and they feel blessed to have such a special little girl.
Now they're off on a vacation, thanks to the Make a Wish foundation. Kelly's parents told the foundation about Makayla and the Read family was chosen to go to Disney World.
The one thing the Read family says they're looking forward to the most is the fireworks and parades. They say Makayla responds well to bright lights and loud noises.