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Just 36 hours after she was born, little Evie Toner was rushed to the Medway Maritime Hospital.
After she and her twin sister, Esme, were delivered at QEQM via an emergency c-section on December 31, 2016, she remained at the hospital as she required urgent care.
It had been thought Evie was suffering from sleep apnoea, but when she was transferred to Medway doctors realised she had been having seizures.
MRI scans 13 days later revealed the newborn had suffered a rare stroke, which affected both sides of her brain.
“It shocked everyone,” her father, Gary Toner, said.
“We don’t know when the stroke happened, but she was born in poor condition.
“Another scan showed further loss of brain tissue since then.”
It is believed the damage caused by the stroke to Evie’s brain led to her developing four-limb cerebral palsy and epilepsy.
The former means she is unable to sit up unassisted or ever walk or crawl.
After raising concerns about her vision, Mr Toner and his wife, Lucy, took their daughter to Great Ormond Street hospital for yet more tests.
“We were told she’s blind,” her father said.
“She is able to differentiate between light and dark, though, so if you put yourself in the way of the light she’ll be able to know you’re there.”
Mr Toner believes Evie, who also has a seven-year-old sister called Megan, will never be able to speak.
He says that she is able to say ‘dada’, but that he and Lucy, who live in Beltinge, are unable to gauge if she understands the word “or if it’s just because it’s something a baby would say”.
Because of the myriad issues she has, her parents are aware they will have to care for her for the rest of her life.
“The condition is life-limiting, so she’ll always be a baby and will always require our care,” Mr Toner explained.
“For children in Evie’s condition, things like chest infections could be detrimental to her because she can’t move around at all to clear her chest.
“There are so many conditions that are almost unavoidable because of her condition - like scoliosis of the spine and her hips.”
As a result, Mr Toner is preparing to run in September the 45-mile route Evie took from QEQM to the Medway Maritime Hospital to raise £20,000.
He has already reached half the target - raising an impressive £10,400.
The funds will go towards buying specialist equipment for the two-year-old.
“It’s to provide her with all the opportunities and what she needs to help her enjoy the life that she will have,” the 40-year-old said.
“Initially we’ll look to buy sensory equipment that she could benefit from and things like strollers – which can cost anything from £2,000 to £5,000 – later on.”
Mr Toner added: “Evie’s a remarkable little girl.
“She’s got a lovely personality and enjoys laughter around her.
“She brings so much more to our lives than people would probably imagine.”
To ready himself for September, Mr Toner will be taking part in a number of runs, and has already completed the Thanet 20-Mile Road Race and Brighton Marathon.
In order to donate to the family's cause, click here.
