3 days ago
Girl, 3, who was 'wobbly' now facing 'heartbreaking' condition
A mum has described the "heartbreaking" reality of seeing her three-year-old daughter's health declining each day - as she loses the ability to walk and talk. Maria Rushaid Algaradi is now fighting to raise cash for vital medication to prevent her daughter's condition worsening before a planned transplant operation.
Mylah Algaradi is three-years-old. She was diagnosed at birth with a rare and debilitating condition called Arginase deficiency, which is part of the urea cycle of disorders.
This severe metabolic disorder is now relentlessly attacking Mylah's health, causing her mobility to deteriorate day by day.
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Although Mylah has been dealing with this condition since birth, she had been developing well and was 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.
However, earlier this year, she began struggling to walk and within a matter of weeks she lost the ability to walk or stand altogether. She is also now struggling to talk.
TO DONATE TO MYLAH'S FUNDRAISING CAMPAIGN PLEASE CLICK HERE
Her family say the rapid progression of Arginase deficiency on Mylah has been both shocking and harrowing, robbing her of the simple joys of childhood mobility such as running around a room with friends or playing in the garden.
Mylah's mum, Maria, 35, told the 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 also now finding it harder to talk, struggling to say what she wants to say, with her words now coming out more slowly. Her family said they no longer get the "easy chats and giggles" they once enjoyed with their little girl as this cruel illness and its effects continue to get worse.
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 currently on the waiting list for a liver transplant under Leeds Children's Hospital, where she has been since January 2024. Her family believed there was enough time for the transplant to happen before any of the very serious symptoms would begin.
Mylah's uncle - had 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, the little girl has had to have her tonsils removed to eliminate the risk of tonsillitis after the transplant when she will be heavily immune suppressed.
The reality is that the vital treatment Mylah now desperately needs to slow the progression of her disease - and potentially reverse it- is not currently 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 this 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 says 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 an impressive £18,000 - however much more is required to raise the £56,000 needed for the treatment she requires.
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."
If you are able to contribute to Mylah's fund, please do so here or search 'Help Mylah Get Treatment To Fight Arginase Deficiency' on
