Their son has been diagnosed with Prader-Willi Syndrome
(OSGOOD, Ind.) – Taylor Barrett loves being a mother, although she didn’t expect the challenges that has come with her first born.
Barrett’s 9-month-old boy, Mason, has been diagnosed with a rare genetic disorder known as Prader-Willi Syndrome.
The disorder affects approximately one in 30,000 people and it is something that is often diagnosed shortly after birth.
One of the defining symptoms of the disorder as an adult: Having an excessive appetite and overeating.
It also causes a range of other symptoms such as restricted growth, weak muscles, learning difficulties and behavioral challenges.
Prader-Willi Syndrome also has several autistic-like characteristics such as developmental difficulties, poor social interaction skills and the presence of repetitive behaviors.
Barrett says she has learned as much as she can about the rare disorder.
The family had to spend a substantial amount of time in the hospital before Mason was diagnosed with Prader-Willi syndrome.
What causes it? It’s caused by missing genetic material in a group of genes on Chromosome 15 inherited by the father of the child.
“As an infant, they have low muscle tone and breathing problems and once they reach 2 years of age, they don’t develop the chemical in their brain to let them know they're full,” Barrett told The 812.
She and her husband are wanting to spread awareness about Prader-Willi Syndrome and serve as local advocates for others who live with the disorder.
“I really want people to know that there’s people that look a certain way, that is totally normal, but there is a lot more going on,” she said.
For example, the Barrett’s now use handicap parking with Mason and that draws attention at times.
“People look at us like we’re nuts, because everything looks normal, but really it isn’t normal,” she added.
Taylor has been forced to quit her job as taking care of Mason requires frequent trips to Cincinnati, Indianapolis and also to the Prader-Willi syndrome Clinic in Columbus, Ohio.
The family is not seeking any financial support, but simply wanting to spread awareness.
You can follow along with Mason's journey by clicking here.
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