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Local advocates travel to Jackson to witness governor sign 'Rare Disease Day' proclamation

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Gov. Phil Bryant on Wednesday signed a proclamation designated Feb. 28 as Rare Disease Day.

On hand to witness the signing were Nancy Depreo and five-year-old Hunter Bingham of Hancock County.

Depreo serves as the Mississippi Volunteer State Ambassador for the Rare Action Network, which is under the umbrella of the National Organization for Rare Disorders.

Depreo said that there are more than 7,000 rare diseases. More than 400,000 Mississippi residents have been diagnosed with a rare disease and 200,000 of those are children, she said.

One of those children is Hunter.

Hunter is the son of Beth and Ray Jay and has three siblings.

When she was pregnant with Hunter, Beth said, he wasn't gaining weight.

At about 32 weeks, the doctors decided to perform a C-section. Hunter weighed two-pounds and 12-ounces when he was born, she said.

When Hunter was about 14 months old, Beth said, her son became ill.

"The pediatrician said he looked different and that there might be something more serious wrong with him," she said. "He referred us to a geneticist at Children's Hospital in New Orleans."

It was there that doctors diagnosed Hunter with Russell-Silver syndrome, a rare disease that stunts growth and development in children, Beth said.

"We've been lucky," she said. "We had a few setbacks in the beginning."

According to the U.S. National Library of Medicine's website, Russell-Silver syndrome is a "growth disorder characterized by slow growth before and after birth. Head growth is normal, however, so the head may appear unusually large compared to the rest of the body. Affected children are thin and have poor appetites and some develop recurrent episodes of low blood sugar as a result of feeding difficulties."

Other physical characteristics of the syndrome include, a small triangular face; prominent forehead; narrow chin; small jaw; downturned corners of the mouth; unusual curving of the fifth finger; uneven growth of some parts of the body and digestive problems, the website states.

Beth said that Hunter's right side of his body is bigger than the left side.

"Educational, he's fine," she said. "But he's very small for his age."

Hunter, who is a student at East Hancock Elementary, is administered a growth hormone injection six times per week.

There is no specific treatment for Russell-Silver syndrome, Beth added.

"The injections help him grow," she said. "He's gotten a lot taller and weighs about 40 pounds now. That's all we have to do. We've been very lucky that all it's affected is his growth."

Beth said that other children affected by this syndrome are constantly in the hospital. She added that about one in 100,000 people will be diagnosed with Russell-Silver syndrome.

Beth said Hunter will receive shots until he's about 14-to-16-years old.

After finding out Hunter's diagnosis, Beth said, "it was scary."

"You don't know what you're looking for and watch everything," she said.

But Beth wants her son to remember that being smaller doesn't mean he can't do what he sets his mind to.

"I don't want him to think he can't because he's too little," she said.

Beth described Hunter as "very outgoing" and that the syndrome "doesn't affect him at all."

"He never meets a stranger and has to be the center of attention everywhere he goes," she said.

She said that was true when Hunter met Gov. Phil Bryant on Wednesday.

Depreo, who is also a friend of the Bingham family, invited the Binghams to participate in Rare Disease Day.

"He said he was going to see the president," Beth said. "He loved it. He was amazed by the Capitol and how big it was. The governor gave him a toy helicopter from his office and that's all he talks about."

Learn more about Rare Action Network at www.rareaction.org and the National Organization for Rare Disorders at www.rarediseases.org.

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