'My toddler was a little wobbly - months later she can't walk or talk'
A mum has shared her 3-year-old girl's "heartbreaking" condition after she noticed she was "wobbly."
Maria Rushaid Algaradi described seeing her daughter Mylah's health declining each day as she loses the ability to walk and talk. The mum is now raising money for vital medication to to prevent the condition from worsening ahead of a planned transplant operation.
Mylah was diagnosed at birth with Arginase deficiency, a rare and debilitating condition, which is part of he urea cycle of disorders. The metabolic disorder has relentlessly attacked Mylah's health, causing her mobility to deteriorate by the day. It comes after the NHS warns mouth symptom could be life-shortening disease.
Mylah has been dealing with this condition since birth, she had been developing well and had been meeting all her key milestones having followed a strict low protein diet under the care of Alder Hey Children's Hospital and Manchester Children's Metabolic Team.
But earlier this year, she started began struggling to walk and within a matter of weeks she lost the ability to walk or stand. Little Mylah is now struggling to talk.
Mylah's family said the rapid progression of Arginase deficiency on the girl has been shocking and harrowing, robbing her of simple joys of childhood mobility such as running around a room with friends or playing in the garden. Maria, 35, told The Liverpool Echo: "It is just absolutely heartbreaking.
"This disease usually progresses slowly but with Mylah it all happened so quickly and took us all by surprise. We noticed her being a bit wobbly on her feet a few months ago, but she had recently been on antibiotics after an operation so we thought it was that. But within weeks she was barely able to walk."
Mylah is now finding it hard to talk, struggling to say what she wants to say, with her words now starting to come out more slowly. Her family said they no longer get the easy chats and giggles" they once enjoyed with her as the cruel effects of the illness intensifies.
Maria added: "It is such a struggle for her to get her words out. For the first few days she just cried because she couldn't say what she was trying to say.
"The songs we used to hear her sing, she can't manage the first word of them anymore. It is so hard watching her decline every day. Her behaviour is changing. She can't play like she used to."
Mylah is now on a waiting list for a liver transplant under Leeds Children's Hospital, where she has been since January last year. Her family believed there was enough time for the transplant to happen ahead of any serious symptoms.
Mylah's uncle put himself forward as a liver donor and is a blood group match, however the full assessment for this process will take some time. To add to the situation, Mylah needed to have her tonsils removed to eliminate the risk of tonsillitis after the transplant when she will be heavily immune suppressed.
Mylah now needs the vital treatment to slow the progression of her disease, and potentially reverse it, is not available on the NHS. The cost of Pegzilarginase is an eye-watering £4,600 per vial, working out at nearly £56,000 for a 12-week course.
Without the treatment, Mylah's condition will continue to deteriorate and could lead to irreversible damage. Mylah's mum contacted the manufacturer of the drug to apply for compassionate access, but was denied, her doctor's efforts to get individual funding from Alder Hey were also unsuccessful.
Maria said setting up a crowdfunding campaign was a last resort but the family are out of options as they desperately try to find the cash needed for the 12-week course of the drugs for their cherished little girl.
A GoFundMe page was started for Mylah on July 26 and has already amassed some £18,000, although £56,000 is needed for the treatment she requires. To visit the fundraiser, click here.
Maria said: "People have been absolutely amazing. I keep crying every time my phone pings and someone else sends a donation, whether it is £5, £50 or £100. There are so many people who I don't know, who I have never met, who are being so generous."
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