Parents Gather in DC in Support of Children with Fragile X Syndrome and Similar Conditions

Having a child was an exciting moment for the Blackwood family. Their son, Sam, is now nine years old. It was around his first birthday, however, that they started to worry. Something just didn’t seem right. Their son missed several important developmental milestones. This led to a round of tests, ultimately revealing that Sam had a genetic condition known as fragile x syndrome. His parents say that without medicaid it would have been difficult to keep up with his needs. That’s why the Blackwoods traveled to Washington D.C. for the “Speak Now for Kids Family Advocacy Day.” Keep reading to learn more, or follow the original source here for more information.

Whats is Fragile X Syndrome?

Fragile X syndrome, also known as FXS, is an inherited developmental disorder. Fragile X syndrome causes learning disabilities and cognitive impairment. Fragile X syndrome is a chronic condition and many people living with it are unable to live on their own.

FXS is caused by a defective gene found on the X chromosome which, when mutation occurs, prevents the production of a necessary protein known as fragile X mental retardation 1 protein. Common symptoms of fragile x syndrome include developmental delays, speech impairment, learning and intellectual disabilities, and social and emotional problems.

Click here to learn more about fragile X syndrome.

“Lawmakers Don’t Know”

The Blackwoods traveled to Washington D.C. not just for their own son, but for the others like him all over the country that live with similar diseases. Because pediatricians, therapists, psychologists, and other specialists are vital to the health of children like Sam, programs that assist with the costs are important. As a result, advocacy is crucial.

“Lawmakers don’t know all the issues facing our children,” says Robin Blackwood, Sam’s mother. “It’s up to us,” she continues, “to educate them on these issues.” Not doing so in an effective manner, Robin explains, leads to important programs being cut, and helpful funds being allocated into the wrong places.

Dr. Desmond Kelly, one of Sam’s doctors, corroborates this idea. There is a need, he says, for continued advocacy. As he explains, whenever there are cuts, either at the federal or state level, children with disabilities are always at a higher risk.

Advocacy in Action

Robin Blackwood switched from full-time work to part-time work, to eventually staying at home when her son required care. She also began to advocate for other children with disabilities during this period. Specifically, Robin focused her attention on legislators. Since they shape and direct policy that directly affects children, Robin deemed this form of advocacy most important.

“If they don’t hear it from us,” she says,  “they’re not going to hear it.”

That is why Robin and the other parents took their message directly to Washington D.C. The parents asked Congress to protect the Medicaid program. They also pressed for the passing of the Advancing Care for Exceptional Kids Act, and the reauthorization of the Children’s Hospitals Graduate Medical education program.


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