Mom fights for son’s sight

LAPEER — When Ashley Fuller’s first child, Johanvan, was born he was small. She had just turned 18. Other than being born with a severe case of jaundice she thought he looked just fine.

Months later, however, the crushing news came.

Her pediatrician sent her to a opthamologist and neurologist in Flint because Johnavan’s rapid eye movements were troubling.

What the doctors in Flint found changed everything. Johnavan, they said, was suffering from Septo-optic dysplasia (SOD) and Optic nerve hypoplasia (ONH), a pair of congenital defects that leave their sufferers blind or nearly so.

“It pretty much devastated me and my mom,” said Fuller, adding “I cried about it for a little while and then decided to do what’s best for him.”

The doctors did not give Fuller a lot of hope. Since SOD includes an absence of the midline part of the brain in addition to underdevelopment of the optic nerve, varying levels of mental retardation are involved.

At one point Johnavan, who’ll be seven in July, attended a center for the blind in Taylor, but now he takes classes for special needs students at the Lapeer County Intermediate School District’s Lapeer Education and Technology Center in Attica Township.

Fuller said her son has been on growth hormones since he was two; thyroid medication since he was three; and takes melatonin to help him sleep.

Ever since he was born, said Fuller, she and her mother have regularly scanned the Internet looking for something that would hold out hope of a normal life for Johnavan. “People kept saying, ‘There’s nothing you can do,’” she said.

Recently they discovered Beike Biotech. Based in Taizhou, China, the company has been conducting stem cell research since 1999 and offers adult stem cell therapies for a variety of serious medical conditions including ataxia, brain injury, cerebral palsy, diabetic foot disease, lower limb ischemia and optic nerve damage.

Fuller believes Beike Biotech can help her son see. She said the facility has treated nearly 100 children with 90 percent of them seeing at least some improvement.

However, Fuller is realistic about her son’s chances. “If it doesn’t happen, it doesn’t happen, but at least I tried.”

Trying, however, won’t be cheap. It’s a long way from Lapeer to China and they’ll have to stay there four to eight weeks and the treatment and travel costs will total about $60,000.

The medical treatment alone, she said, will cost $35,000 and Beike Biotech wants a 20 percent down payment before they’ll schedule a procedure.

Fuller’s insurance company won’t cover the procedure, which has yet to be approved in this country.

To cover the cost of the trip and treatment Fuller and her mother are planning a series of fund raisers.

The first will be a spaghetti dinner at the Attica Township Hall, 4350 Peppermill Road, Attica, from 4 to 8 p.m. Saturday. Tickets are $7 for people 12 to 64; $6 for people 65 and up; $4 for people 4 to 12; and free for anyone under 3. There will be a drawing for a potted arrangement every half hour and a 50/50 drawing.

She’s also set up a web site for Johnavan, www.hope4johnavan. weebly.com. Fuller can be reached at 810-660-7708.