Bartlett resident Amy Mullen is hoping that family, friends and neighbors can help her with one all-important challenge: Saving her vision.
She has Stargardt disease, an inherited form of macular degeneration. Cells in the center of her retina are dying, destroying the middle of her visual field. Although she has three siblings, she was the only one who inherited the disease.
But many Stargardt patients are blind before age 12, she said. “The sight I have, I’m very grateful for.”
For now, the 33-year-old wife and mother can still see well enough to function (and even pass a state driving exam) with the peripheral vision she still has, but the disease is progressive. The creeping gray fog in the center of her vision continues to expand.
But she is lucky to be facing this disease in 2016, because there’s a promising stem cell treatment that could not only save her sight, it could also reverse at least some of the damage, she said.
“God has brought me this procedure at the perfect time,” she said.
She said the surgery would extract bone marrow from her hips and create a stem cell serum to inject behind her retinas, possible restoring her dying retinal cells.
The catch is that she needs $19,600 to pay for the treatment, and she needs it quickly. She has a window of opportunity when she can have the surgery. Her surgery date will be May 3 if she can raise the funds.
The procedure is not yet widely enough used for her insurance company to consider it for payment, unfortunately. It’s been used in Germany for years but has not yet gained traction in the U.S., she said. The treatment would be revolutionary for her, and she has faith the fundraising will all work out.
“Our prayers will be answered,” she said.
She has always had poor vision. High school got progressively more difficult as her vision worsened, and she was eventually diagnosed at 16 after she had problems with her first vision test for a driver’s license.
It’s one of the only three incurable eye diseases she might have faced, she said ruefully.
She makes do through the miracles of modern technology, using her smartphone to dramatically enlarge text so she can read it with her side vision. Her children, ages 10 and 5, are big helps. The older son reads recipes and food ingredients to her when needed.
She also praises her husband for his support.
“He even polishes my toenails for me if I need it,” she said.
Reading menus at restaurants is impossible without help, and she also can’t see well enough to read books. The blind spot in the center of her vision makes it challenging to put on makeup. But she doesn’t give up.
Mullen has worked steadily at a roofing company, attained status as a certified nursing assistant (CNA) and takes care of her husband’s grandmother. She’s anticipating more possibilities if she can just help her vision improve.
People who want to help can donate at gofundme.com/s7q6pyrw or just search the GoFundMe.com site for her name. As of Thursday, March 10, she had raised $3,970 of the $19,600 she needs.
Her church, Advent Presbyterian, is also accepting donations on her behalf.
It’s hard to know a cure is there and to be separated from it only by the cost.
“I want to see the light at the end of the tunnel,” she said.
