A desperate mother is pinning her hopes on a last-ditch therapy in the hope of seeing a glimpse of the daughter she loves returning to her.
"The treatment won't bring her eyesight back,” Adele Ingham says. “But it might help her to say the odd sentence instead of just the odd word. There's still hope and a lot of fighting to do but I won't stop."
Five years ago, Molly Ingham was a healthy, outgoing six-year-old when life as she and her family knew it changed. It was heartbreaking: Molly had multiple seizures, frightening memory-loss episodes, had trouble with mobility and her eyesight started to deteriorate.
Many doctors’ visits later, she was diagnosed with Batten disease, a rare form of dementia that affects the brain, sight and motor function.
Now 11, Molly, who
lives near Manchester in the UK, isn’t expected to live to adulthood but her
mom is determined not to give up hope.
She wants her daughter to have advanced gene therapy in Austin, Texas, which might be able to bring back a shadow of the child she loves.
“I might have only a few years left with her, and that’s being positive,” Adele says.
Molly is confined to a wheelchair now and regularly becomes confused.
“It’s been devastating to watch the most outgoing little girl, who could do everything every other six-year-old could do, go into this situation. It’s soul-destroying,” the heartbroken mom says.
Molly’s short-term memory is non-existent, Adele adds. “She can’t take in new things. She started a special school last September and made lots of friends, but she can’t remember any of their names now.”
Molly often asks if she can go home when they’re already at home. “There’s a lot of confusion,” Adele says. “My dad died two-and-a-half years ago and she still wants to go in when we drive by his flat.”
Molly has even forgotten the words to her beloved Disney songs. “She used to know every word to every Disney song. Now she can’t even string a sentence together.
“Her vision is almost completely gone now too. I just bought her a new Olaf toy and she didn’t know what it was until she felt his carrot nose.”
Adele remembers all the new things Molly was learning to do before the disease took hold – she could ride her scooter, she loved the climbing frame at the park and she was doing well in kindergarten.
But when she was six teachers noticed how she “zoned out”. A paediatrician suggested she might have ADHD or a low IQ – but when she started having seizures it was clear something was very wrong.
“Last year we had to call an ambulance because she was hallucinating,” Adele says. “She could see spiders crawling all over the walls and I couldn’t calm her, so we spent three days in hospital where she had lots of tests and was finally diagnosed.”
And the diagnosis, when it came, was heartbreaking. The girl she knew is gone, Adele says. All she can do now is pray for a miracle and take each day as it comes.
According to the National Institute of neurological disorders and strokes in the UK, Batten disease, otherwise known as neuronal ceroid lipofuscinoses, is a fatal disorder that affects the nervous system.
The condition, which typically begins in childhood, can begin with vision problems and seizures and worsen to include cognitive impairment, severe epilepsy and progressive loss of sight and motor functioning.
Most sufferers don’t live beyond their early 20s.
The condition belongs to a family of rare diseases caused by genetic mutations which disrupt the cells' ability to dispose of waste. Cells are “thrown out of balance” which results in a build-up of proteins and fats.