A grieving family have revealed how their daughter fought to the last before dying in a specialist children’s hospital just a fortnight before her second birthday.
Maisy Hughes died on Sunday after being transferred to Liverpool’s Alder Hey Hospital two days before.
In the end I think her body just got too tired to fight any more
Just 24 hours before her death Maisy was due to be moved to intensive care but her health improved.
However she died the following day as her distraught mother Kim Hearn, 26, and father raced to Merseyside to be by her bedside.
Dad John, 29, of Broadway, Fleetwood, said: “Maisy fought all her life and we had come to think she would defy the odds and be around for ever.
“She had been poorly ever since she had an operation to insert a feeding tube a few weeks ago. She had been in and out of Blackpool Vic, but when her health worsened, she was moved to Alder Hey.
“The day before she died she started to get better and that raised our hopes.
“In the end I think her body just got too tired to fight any more.”
At two days old, Maisy was rushed to Blackpool Victoria Hospital where she had a scan which showed a large cyst.
She was transferred to Royal Manchester Children’s Hospital for treatment.
Following this she was transferred to Derian House Children’s Hospice for end of life care as it was believed she would not live beyond a few hours.
But she survived – and last year, at the age of 15 months, she was given a £200 donation by the Gazette’s Swallowdale Trust appeal to buy specialist sensory equipment and toys to improve her quality of life.
Maisy’s condition affects one in 10,000 newborns.
Septo-optic dysplasia is a disorder of early brain development.
Although its signs and symptoms vary, this condition includes underdevelopment of the optic nerve and abnormal formation of structures along the brain.
As a result off her condition, Maisy was blind and needed constant round-the-cloc care from both parents.
However Mr Hughes revealed the youngster loved to laugh, bounce around and cuddle her mum and dad.
“She loved sudden loud noises, for some reason, probably because she was unable to see,” he said.
“When her grandad was around drilling the wall Maisy couldn’t help laughing. She was giggling all day.”
Mr Hughes said Maisy would be missed by her sisters Keira Cowell, nine, and five-month-old Holly.
He said: “Keira cannot understand that Maisy will not be coming home again.
“We are all very sad but we know that Maisy still had a lot of fun in life despite her condition.”
Mum Kim said Maisy had enjoyed playing with the sensory toys.
She said: “The toys were brilliant for her.”
Miss Hearn said the first few days of Maisy’s life in March 2014 were very traumatic – with doctors admitting she might not have survived.
She added: “I got discharged from Blackpool Victoria Hospital on the Friday when I had her.
“But by Sunday morning she was blue. She had not been feeding great and she was very cold, with her breathing deteriorating.
“We went back to hospital and after a scan found she had a large cyst. She was given a high dose of morphine, where she went into a coma. They told me she might not wake up.
“The doctors did a scan and found one part of her brain had not developed.
“I don’t know how I kept strong. It affected everyone. My world was turned upside down.”