Jaymesun Smith loves to laugh. With an ear-to-ear grin, he trots around the house in his baby walker surrounded by multi-colored stuffed animals.
If it weren’t for the glasses and hearing aids he wears, it would be difficult to detect anything wrong with the 14-month-old boy; that he has a rare, terminal disease.
“(The disease) doesn’t affect his happiness,” says his dad, Matt Smith. “He’s always happy.”
Jaymesun is the first child for Ashley Groff, 25, and the second for Smith, 29. Jaymesun suffered from double pneumonia at birth and spent 11 days in intensive care.
“He almost died in his first few days,” said Smith. “The doctors told us that he’s a fighter. He’s very strong.”
The little boy recovered, but soon his parents began noticing a steady deterioration in his hearing and sight.
Medical tests revealed that Jaymesun suffered from a rare disease called leukodystrophy, which is a deterioration of the brain lining that causes neurons to misfire. That leads to blindness, loss of hearing, loss of motor skills, the inability to speak and other serious problems.
Researchers say the average lifespan of a child suffering from leukodystrophy is anywhere from two to 10 years, although there has been one case of someone living with it to age 25.
Although he was diagnosed just two months ago, Groff said she knew something was wrong while she was pregnant.
“I had a feeling something was going to be different,” she said. “I think now that was God preparing me.”
There was quite a bit for which to prepare.
Jayemesun is deaf in his left ear and suffers severe hearing loss in the right. The vision in his right eye is impaired. He cannot talk, and he cannot walk. Doctors are not sure if he will ever do either. He also has an aversion to the texture of regular food, so he still eats baby food.
Groff is unable to work because of Jaymesun’s rigorous schedule of therapies and the special care he needs at home.
Monday is physical therapy.
Tuesday is occupational therapy.
Wednesday comes speed therapy and more physical therapy.
Thursday is another day of occupational therapy.
Friday, Saturday and Sunday are free days, but feeding therapy is occasionally scheduled on those days as well.
Jaymesun’s parents have hope. The United Leuokodystrophy Foundation is holding its annual conference next month in Chicago.
Doctors and scientists from around the world will gather to discuss the latest findings and treatments for the disease. They also will examine the medical records of any child.
“It’s like getting 100 second opinions all at once,” said Groff. “Sometimes the kids are invited to take part in a medical trial.”
It would be critical to take Jaymesun, but his parents aren’t able to pay for the trip.
Smith had owned his own car-transport business, but a combination of the economy and gas prices forced him to shut it down. He’s trying to get it going again, but in the meantime he is doing whatever it takes to make ends meet, including selling things he finds at garage sales on eBay.
Jaymesun is on Medicaid, which handles the cost of some of his medical bills.
But it doesn’t pay for everything. So, the Lions Club of Bradenton donated the funds to buy the boy’s glasses, and the Early Steps Program funded his hearing aids.
“The most amazing strangers come by to help us,” said Groff.
The couple is holding two fundraising events to help them collect the funds needed to take the trip to Chicago (see box).
“We’re not going to take ‘no’ for an answer,” said Smith. “I’ll travel anywhere — Chicago, China, wherever we need to go to help him.”
Smith’s first child, a daughter named Kaitlyn born 10 years ago, was diagnosed with brain cancer. She died before her second birthday.
“I was a little angry to my higher power, but I remained faithful,” he said. “I had to ask God, ‘Why put me through this again? Haven’t I learned enough?’”
But Smith believes that only strong parents have a trial such as this placed upon them.
He knows he has to stay upbeat for Jaymesun.
“If we get negative, it will rub off on him,” he said. “We do have bad days, but we’re so happy to have Jaymesun.”
The parents know they have many difficulties ahead of them, but they are remaining positive about the future.
“People take for granted that their kid is perfect,” said Groff. “They say, ‘My kid is driving me insane.’ I wish my kid were driving me insane. But I’m happy the way he is, because he’s special. He’s one-of-a-kind.”
What is Leukodystrophy?
Leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the brain lining that insulates nerve cells. It causes blindness and deafness, as well as the inability to speak, walk and eat. These disorders tend to get worse throughout the life of the patient.
Jaymesun Smith’s parents will hold a benefit dinner to try to raise enough money to travel to Chicago to attend the United Leukodystrophy Foundation’s annual conference.
The dinner will be held from 4 to 8 p.m. Saturday, June 25, at Concordia Lutheran Church, 2185 Wood St., Sarasota.
The cost is $5 at the door, which includes a full dinner. There will also be a bake sale, Chinese auction and games for kids.
For those who cannot attend but still wish to help, a trust fund has been established at SunTrust Bank.
Call or visit any branch and ask for the Jaymesun Matthew Smith Irrevocable Trust.
Any money collected more than is needed for the Chicago trip will be put toward Jaymesun’s ongoing medical care.
Jaymesun’s mother, Ashley Groff, said in the event her son dies, the money will be given to another family with a child suffering from the same disease.
A second fundraising event will be from 9 a.m. to 4 p.m. July 9, at The Worship Place, 5535 33rd St. East, Bradenton.
Contact Robin Roy at [email protected].