A mother is determined to create a garden to help make her daughter's last summer special after she was diagnosed with an incredibly rare condition. Fay Elliott had issues throughout her second pregnancy, with her daughter too small throughout and issues with blood flow to the baby.
Maisie was born weighing only two pounds and was diagnosed with Galloway Mowat syndrome. The extremely rare genetic disorder is characterised by a variety of physical and developmental abnormalities, particularly neurological abnormalities and early onset progressive kidney disease, according to rarediseases.org.
Fay, originally from St Helens, says 16-month-old Maisie still only weighs 11 pounds. And the 27-year-old is keen for the family to enjoy their remaining time with the tiny tot, who requires around the clock care.
Fay told the Liverpool 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 with Maisie's dad James, 30, to an area where her daughter can receive the hospital treatment that she needs. 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 lie in the garden with her."
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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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