Read another article about Batten Disease.
Sheldon’s mission has nothing to do with the November 13th municipal election, but he still spent all day yesterday campaigning.
More imperative that winning office, wielding power over people or even a whole city are the stakes for Sheldon and his wife Lori.
Without some sort of miraculous medical intervention, the couple’s two young children are destined to die before they reach their teens. Thus, the couple embarked on a campaign to help save their lives.
Eventually robbing its young victims of their speech, sight and motor abilities, Batten disease is a fatal inherited nervous system disorder that causes the brain to shrink and shut down over time. Time is passing by everyday for five-year-old Jamie and two-and-a-half-year-old Carson. As of now, there is no prevention for it nor a known cure.
The only hope for the two children may be a radical stem cell procedure in China. So Sheldon, who is a millwright, and his wife have been knocking on the doors of corporations in just about every city to find donors to raise the $150,000 needed for treatment.
“We thought, ‘Shoot, that’s pretty expensive,'” Sheldon said of the experimental brain surgery.
“And I’m really nervous about it, I won’t deny it. But it’s the only thing we’ve got left to do. There’s nothing else out there for them.”
Jamie has to be fed through a tube and carried wherever she needs to go, and she cannot see, speak, or move, much on her own anymore.
Carson can still see and move, but he has begun to lose the few words that he had learned thus far in his life, including “mom.”
The couple read about an eight-year-old city boy who underwent the stem cell procedure in Beijing last Wednesday in an issue of The Spectator.
They have spoken by telephone to a British woman whose eight-year-old daughter had the treatment. Spending time visiting a website documenting the progress of young patients at the Beijing hospital is also part of the agenda.
“The pictures we’ve seen of her daughter, she looks more alert,” said Lori.
“And before, she couldn’t walk at all but since the procedure, she’s been able to walk with someone helping her.”
At first, doctors thought Jamie was epileptic when she had seizures just after her third birthday. Lori was eight months pregnant with Carson at the time.
The diagnosis became autism when Jamie stopped making eye contact and began to lose words.
Autism changed to Batten disease when Jamie stopped eating and drinking and stopped walking.
Carson was diagnosed last September.
Another child, Preston, died on January 1st, 2000, at the age of one month. He was born with a heart defect.
Both parents also have children from previous relationships. Sheldon has an eight year old daughter who has been diagnosed with Lupus, a chronic disorder of the immune system. Lori has a son named Zackery who is healthy.
Lori’s aunt Suzy help out with Carson’s and Jamie’s care along with two home care workers
“I try not to dwell on it,” Lori said. “I try not to look at my kids like they’re sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children.”