A 4-year-old girl from England is losing her ability to walk and speak due to a rare disease damaging the white matter in her brain.
Camilla “Millie” Pengelly-Wood – who suffers from late infantile metachromatic leukodystrophy – likely won’t live to be 10 years old. Sufferers of the disease usually succumb to infections like pneumonia, unable to fight them off in their already weakened state. The disease attacks the “white matter” of the brain, leading to a deterioration of physical and mental abilities as time progresses.
Her heartbroken mother, Lucy Pengelly, 31, from Gloucestershire, believes had doctors spotted her daughter’s disease sooner, she might have been a good candidate for stem cell treatment. There is no known cure for the disease.
“Doctors didn’t give us the full diagnosis until it was too late. It was in March this year but we had the tests done back in November which showed the faulty genes,” Pengelly told SWNS.
“I feel let down by it,” she lamented.
Millie developed normally until she was 1 year old but slowly started to regress developmentally. She loved singing and swimming but now can’t do either of those things.
“I noticed that Millie did not progress much past her first steps,” Pengelly said.
Pengelly took Millie to the doctor when she noticed her daughter started walking with her feet turned inwards and that her coordination was off.
“There seemed to be a lot of movement in her joints so we went to see a pediatrician who noticed that her eyes would flicker and she had an ever-so-slight tremor,” she said.
Now Millie can’t sit unsupported and has trouble communicating. She is fed through a nasogastric tube in an attempt to help her gain weight and maintain strength.
“It’s devastating watching your child have their life robbed away from them,” Pengelly said.
“We are grieving someone who is sat in front of us – there’s nothing that can be done now,” she added.
Despite Millie’s bleak prognosis, her parents are doing everything they can to support her and make her life as joyful as any other child her age.
A family friend set up a Just Giving page to help the family afford a trip to Disneyland Paris, and others donated necessary equipment such as special indoor chair and a standing frame. Millie’s father Daniel set up another crowdfunding page to raise money for more medical equipment.
“There is still an awful lot that Millie needs. The family has been donated sensory equipment and they keep trying to adapt and adjust to her needs,” Pengelly said
“I am trying to get what I can to keep her as able as possible. We need to be able to get her a buggy and a car seat,” she added.
A fundraiser to afford more equipment to help Millie will be held at a local football club on July 22.
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