Mylah Algaradi, three, was diagnosed at birth with a rare and debilitating condition
Three-year-old Mylah Algaradi
A mother has shared the “heartbreaking” reality of watching her young daughter’s health decline daily – as she loses her ability to walk and speak. Maria Rushaid Algaradi is now battling to raise funds for essential medication to halt her daughter’s deterioration ahead of a planned transplant operation.
Three-year-old Mylah Algaradi received a diagnosis at birth of a rare and debilitating condition called Arginase deficiency, which forms part of the urea cycle disorders.
This severe metabolic disorder is now ruthlessly attacking Mylah’s health, causing her mobility to worsen with each passing day.
Whilst Mylah has been living with this condition since birth, she had been progressing well and was achieving all her crucial milestones having adhered to a strict low protein diet under the supervision of Alder Hey Children’s Hospital and Manchester Children’s Metabolic Team.
Nevertheless, earlier this year, she started having difficulty walking and within weeks she completely lost her ability to walk or stand. She is also now finding it hard to speak, reports the Liverpool Echo.
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 Algaradi’s family said watching her decline has been ‘heartbreaking’
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 Algaradi has now lost the ability to walk
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.”