Brave Maeve takes on charity walk
A10-YEAR-OLD with a rare genetic condition which causes damage to her organs is preparing to take part in a four-kilometre sponsored charity walk.
Maeve Byrne, from north Reddish, was just 10-months-old when she was diagnosed with cystinosis, which causes crystals to accumulate in her organs.
Her mum, Sinead, initially took Maeve to the doctor because she was a sickly baby, often distressed, vomiting frequently and not hitting her milestones as she should have been.
After blood tests at Stepping Hill Hospital, Maeve was referred to Royal Manchester Children’s Hospital, where a metabolic specialist diagnosed her with cystinosis, a condition which affects just one in 200,000 children in the UK.
Sinead said: “As a parent I just knew something wasn’t right, but nothing could have prepared me for the news I received.
“I was absolutely devastated, it shook my world to hear that my little girl had a long-term illness and would eventually need a kidney transplant.”
Despite her health problems, Maeve is set to do the Lantern Walk in Heaton Park on November 17 to raise funds for Royal Manchester Children’s Hospital, as thanks for the care she has received over the past nine years.
Maeve is seen in the renal ward, as her kidneys are currently most badly affected. She has to take medication via a gastronomy tube in her stomach every six hours, as well as eye drops every hour.
Due to musculoskeletal discomfort, walking any distance can be exhausting.
Sinead said: “Maeve heard about the charity’s Lantern Walk and wanted to take part to help other poorly children treated on the renal ward.
“So far she’s raised over £1,000 which is just incredible – the support Maeve has received is amazing. I couldn’t be more proud of my little girl, after everything she has been through she is still thinking of others and never complains about all the medication she has to take, she just gets on with it and is my absolute superstar.” Angela Rowe, community fundraising manager at Royal Manchester Children’s Hospital Charity, said: “The walk will be a challenge for Maeve due to her condition, so she should be extremely proud of herself, especially with the incredible amount she has raised.” »●To sponsor Maeve, visit justgiving.com/ fundraising/sineadbyrne6.
●●Maeve Byrne with mum Sinead and, below, in hospital