A Jacksonville man is asking the community’s help to pay his son’s medical bills.
The bicycle shop owner already has lost three children, and a fourth son has a rare brain disease.
Clayton Smith owns Emory Manufacturing Corporation in Eastside near downtown Jacksonville.
“My father and uncle started the bike business in the 40s,” Smith said. “So we’ve been in bicycles since I was a little boy.”
Now he’s focused on as he puts it, building the best bicycle ever. He’s demonstrated a bike part treated with a special process that makes the piece unscratchable.
But the business is on hold because his son, is sick.
“We started seeing some changes around... maybe 16,” Smith said. “Sometimes kids get to be a certain age, teenagers. You think they’re just trying to be obstinate. The trouble was this disease was taking over.”
His son, also named, Clayton Smith, has adrenomyeloneuropathy or AMN. In most cases the disease affects a patient's muscles and nerves. That’s happened with Clayton, but that’s not all.
“In his case and in very rare cases, the adrenomyeloneuropathy attacks the brain,” Smith said. “In that case the prognosis is very, very dire. It’s almost like Lou Gehrig's disease.”
That’s why Clayton is in the hospital, to stop the deterioration of his brain.
Smith and Clayton’s mom Maria have dealt with losing children before. In 1987, their 5-year-old, Wolfie, died of a childhood form of AMN, and just a few years later, their two other children died in a car accident.
“Then we were kidless, childless, and that’s a very bad feeling,” Smith said. “You’re a daddy one day, and the next day you’re not.”
Smith’s wife at the time Maria was unable to have anymore children due to a tubal ligation procedure, but she had it reversed and was able to have Clayton.
Smith now has 10 children including Clayton. His four-year-old, Anderson, FaceTime calls with his big brother, who is now at Johns Hopkins Hospital in Baltimore, recovering from a bone marrow transplant.
“He doesn’t come back because he is sick. So he has to stay in the hospital,” Anderson said. “Parts of him are in the wrong order. They need to be in the right order.”
And when he gets out, he’ll need need to stay in a facility connected to Johns Hopkins and have a caregiver, who’s not completely covered by insurance.
“You have only so many resources that you can allocate to any one thing at a time, so our projects have had to be put on hold while the major thing has to be taken care of, which is seeing that Clayton gets well,” Smith said. “So the next six months are going to be extremely financially and mentally and emotionally difficult.”
Smith says the family is asking for donations of $50,000 through a GoFundMe page. So far, they’ve raised just over $5,000.
