A mum wants to make her daughter's last summer special after she was given an incredibly rare diagnosis.
Fay Elliott, originally from St Helens, became pregnant with her second child, Maisie, in 2021, but early on in the pregnancy the mum was told something wasn't right. Doctors told the 27-year-old that her daughter was too small throughout the pregnancy, and there were issues with the blood flow to the baby.
The severity of Maisie's condition became clear after she was born weighing just two pounds, and was whisked away by doctors. Following genetic tests, it was discovered that the newborn has Galloway Mowat syndrome - a rare genetic condition characterised by neurological abnormalities and early onset progressive kidney disease - making her only the fifth case in the world.
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Now 16 months old, her condition has meant that Maisie still only weighs 11 pounds, and requires around the clock care. Mum Fay told the ECHO: "She was taken away from me at birth and I wasn't able to see her for 26 hours, those first few hours are so important so when I saw her it was like looking at someone else's baby.
"I think her dad tried to stay strong through it all, but it was all so difficult. I was diagnosed with severe PTSD following the birth."
Maisie requiring constant care has meant Fay has had to give up her career as a nurse, and relocate to an area where her daughter can receive the hospital treatment that she needs, with Maisie's dad James, 30. She added: "I've given up my nursing career to care for her as she needs 24 hour attention and oxygen.
"She has a constant cat-like cry, and the only thing that soothes her is flowers. After being told this would be her last summer, we just want to make it as nice for her as possible and build her a garden she can enjoy."
Maisie has a four-year-old brother called Harry, and Fay believes the garden would be perfect for him to spend time with his little sister. She added: "Harry is extremely gentle with her, but it has been hard for him emotionally due to Maisie not being able to respond. He shows her different sensory lights and would love to lay in the garden with her."
Last year, the garden was turfed by landscapers, however a drainage problem has left the family's garden rotting and flooded, with Fay quoted almost £4,000 to fix the damage.
To support a Go Fund Me set up to help cover the costs of the garden, visit here.
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