They’re a family descended from Irish coal miners from Schuylkill County. They’re made of sturdy stock.
Still, few would debate this point: Mary Ann Chestnut’s son Matthew and his wife Rachel have encountered more hardship than most.
Mary Ann, of Narberth, tells the story of her grandchildren Shelby and Benjamin. They’re two of four children born to Rachel and Matthew. (Their two other kids are Patrick, 9, and Jordan Amanda, 6 months.)
Four years ago, when Shelby was 3, she was diagnosed with cerebral palsy. It wasn’t a quick or easy diagnosis.
Matthew and Rachel were still living in the Philadelphia area when they noticed something peculiar about Shelby’s gait. Her heels turned in, in a way that they clicked together.
“She was perfectly gorgeous and she crawled like a little demon,” says Mary Ann. “I’m a pediatric nurse, and nobody would have picked up anything on her. The only thing we might have seen, in retrospect, was that she was a very quiet baby. When she went to walk, her feet were turned in, and they (her parents and doctors) thought it was some sort of orthopedic issue. They were looking at something correctable.”
Later, the family moved to Portland, Oregon, and continued seeking care for Shelby at the local Shriner’s Hospital. Doctors there offered the same diagnosis: An orthopedic problem. ”But with each passing month it got worse,” says Mary Ann. “Then she started into muscle contractures. It took some time to develop.” Ultimately, Shelby was diagnosed with a very severe form of cerebral palsy.
Today, this bright little girl is in second grade, sharp as a tack, and a whiz at the video game Wii, which they also use for therapy at Shriner’s. She can lift her arms from the wrists, but otherwise she is confined to a wheelchair. She can’t talk; instead she uses sign. From time to time, she requires surgery to relieve the contractures. She also takes Botox to prevent the muscle spasms.
All of that was hard enough.
Then along came Benjamin—like his sister, an active little person, full of personality.
“He was born perfectly healthy and then, at 3, he had a cold for about a week, just like any child,” says Mary Ann. Then he spiked a pretty bad fever with it, and he seemed a little wobbly. My son took him to the hospital emergency room. The ER doctors took an X-ray and said he was constipated. He was, but that was a symptom of his illness. They sent him home with cold and constipation and said let it run its course.
“One day, Benjamin just dropped to the ground and stopped walking,” says Mary Ann. “This was about a week after he was in the hospital, and they rushed him back. At first they didn’t know what it was. He was in pediatric ICU for two weeks. Ultimately, they gave him prednisone, but by then it was too late: He was already unable to move his legs at all.”
The diagnosis: a rare disease called transverse myelitis, caused by an inflammation of the spinal cord. Benjamin, now 5, can now crawl, but he’ll never walk. He can’t speak.
Like his sister, Mary Ann says, Benjamin is bright—so bright that in his special ed program, they put him into a regular kindergarten class. Though he can’t talk, he can sign. He has his own personal assistant with him. We’re hoping that (being in a mainstream class) will help bring back those language skills.”
Matthew and Rachel are far from rich, Mary Ann says. So in a country where the definition of catastrophic illness coverage is a big mayonnaise jar with a coin slot next to the pizza parlor cash register, there’s little choice but to look for help wherever they can get it.
This Saturday, you can help.
The Second Annual Shelby and Benjamin Chestnut Fundraising Party will be held all day at the American Legion Hall, 80 Windsor Avenue, in Narberth. From noon to 4, you can attend a luncheon and an auction. Prizes include vacations, original artwork, sports tickets, gift baskets, gift certificates, and autographed books by St. Malachy Church’s well-known former pastor, Father John McNamee—Mary Ann’s cousin through the Garvey family.
And/or: From 6 to 11 p.m. dance until you drop. The night includes great food, beverages and terrific music.
The minimum donation is $25 for each event. Proceeds will go to help purchase a wheelchair van for the family.
Long term, Mary Ann dreams of something bigger. “Our ultimate goal is to hopefully create a foundation, for families who have children with multiple disabilities. Having one child with a disability would be hard, but there are quite a few families with two disabled children, or more.”
If you can’t make the Legion Hall festivities, you can still offer a helping hand. Send a donation to:
The Shelby and Benjamin Trust
In Care of:
The Chestnuts
102 Elmwood Avenue
Narberth, PA 19072
(610) 667-4582
or
The Beneficial Bank
Attn: Regina
901 Montgomery Avenue
Narberth, PA 19072
