Maria Graham shuffled through videos on her Facebook page, eventually stopping on one from 2014.
In it, 3-year-old Layla smiled, dashed around the living room and told her mother that she wanted to listen to one of her favorite songs.
Graham closed the video and scrolled to another one made of her daughter a few months later. In this one, Layla’s steps were more labored, and she struggled to speak the word baby.
“See, that was really hard for her to get out,” Graham said.
Layla is 6 now, and things have progressively become more difficult. She has Batten disease, a rare, degenerative disorder that renders its victims blind, unable to speak and paralyzed before it kills them. According to the National Institutes of Health, it affects 2 to 4 of every 100,000 live births.
Batten disease is one of approximately 50 diseases called lysosomal storage disorders in which genetic mutations disrupt the ability of cells to dispose of waste. Batten disease causes cells to be thrown out of balance by the buildup of proteins and fats. The damage leads to progressive neurological impairment.
Layla can no longer speak or walk. She sometimes has to wear casts on her legs to keep them from clubbing. She can’t sleep at night without a parent beside her.
“That’s just what Batten disease does,” her mother said. “It’s just terrible, and it doesn’t matter what type of Batten disease you have, it’s all going to do that, whether it takes 10 years or it takes one year.”
Doctors at Emory University in Atlanta diagnosed Layla’s disease in September 2014. The family moved from Atlanta to Grandview Heights so that Layla could participate in a clinical trial at Nationwide Children’s Hospital.
The Columbus-based Batten Disease Support and Research Association helped with the move.
“When your child is diagnosed with a disease and you have the opportunity to participate in a possibly lifesaving treatment, you do extraordinary things,” said Margie Frazier, who directs the association, which was founded in 1987 by parents seeking to build a network for those diagnosed with Batten disease.
The group helped find an apartment near other families whose children are in the clinical trial, and it even rented furniture for them, Graham said.
Frazier said the clinical trial at Children’s began in 2014 and includes 20 participants around the world. Three are receiving treatment in Columbus, the only U.S. location, according to the association.
To be eligible, the children had to be walking and able to say 10 words before the diagnosis, according to Graham.
Graham said surgeons insert a port in study participants’ heads to accommodate infusions of enzymes that keep waste from building up. Layla underwent the procedure three days after her family moved to Columbus.
“We were pretty happy because it’s a little bit of hope where there is no hope,” Graham said.
Children’s officials said they can’t discuss ongoing trials.
Graham said Layla’s days are full of treatments and therapy. Every two weeks, she spends a night at the hospital getting infusions. She sees a physical therapist, an occupational therapist and a speech therapist.
During the school year, she and other trial participants attend classes at Robert Louis Stevenson Elementary in Grandview Heights. Layla’s father, Kerry Graham, said their son, Maddux, also attends the school.
Last week, the family went to St. Louis for a Batten Disease Support and Research Association conference. The idea is to bring together families affected by Batten disease and provide education and support, Frazier said.
“I want a lot of people to see Layla. I want to show what the trial is doing,” Maria Graham said. “It definitely has slowed down the progression. There’s no doubt about it.”