A DETERMINED mother has launched an ambitious campaign to fund life-changing surgery that could give her young daughter the ability to walk.
Emily Fitzgerald-Crook was diagnosed with spastic diplegic cerebral palsy as a baby, after being born prematurely and spending six weeks in hospital.
Now aged five, little Emily has never been able to stand or walk independently, her mother Gail Fitzgerald-Crook told The Irish Post this week.
Despite her debilitating condition Emily is “happy, fun and social” her mother explains, but wants to be able to learn Irish dancing like her big sister Erin and “ride a pink scooter”.
She regularly asks ‘When will I walk, Mummy?’, Mrs Fitzgerald-Crook, a nurse who has worked for the NHS for 26 years, admits, and she is determined to make that happen for her daughter.
“Our whole world changed when Emily was born at 32 weeks and two days,” she explained.
“We were told that a scan of Emily’s brain had showed multiple cysts and brain damage and that she may never walk, talk and may not be able to see.
“My husband and I were devastated to take our daughter home from hospital without even knowing if she could see us, it was unbearable.
“But once we stopped crying and grieving for the future Emily and our family would not have, we were determined that Emily’s diagnosis of cerebral palsy would not define her or us as a family.
“We would do all we could to have the best life possible and support her as much as we could.”
The family, Gail, 47, and husband Steven, Emily, and six-year-old Erin, live in Hoylake in Wirral, Merseyside, where they have worked hard to give Emily as normal a life as possible despite her condition.
But she experiences pain on a daily basis and the condition is likely to get worse over the years to come.
“There are still days when it is truly heart-breaking to see Emily struggle to do everyday tasks that we all take for granted, such as getting out of bed, getting dressed, going to the toilet, expending so much energy just to walk short distances with a walking frame,” Mrs Fitzgerald-Crook explains.
“It is also difficult to see Emily in pain. She frequently experiences severe leg pain and cramps and will wake 4-5 times a night.
“She requires leg stretches and will return to sleep. This then will affect her fatigue levels and ability to function the next day.”
Recently the Fitzgerald-Crook family, who have roots in counties Galway and Limerick, secured an operation for Emily that could change her life forever, but they must now find the money to fund it.
“Emily has been accepted to have a surgery called Selective Dorsal Rhizotomy (SDR), by a world leading paediatric neurosurgeon at St Louis Children’s Hospital, in the US in October 2019,” Ms Fitzgerald-Crook, whose parents hail from Loughrea in Galway and Askeaton in Limerick, explained.
“SDR is the only procedure that can provide permanent reduction of spasticity (muscle tightness) in cerebral palsy, free her from pain and stop bones from deforming as she gets older – so it is life changing for Emily, her family and her friends.
“It is her only opportunity to walk independently and permanently reduce the spasticity in her legs.”
With the operation due to take place next month, the Fitzgerald-Crook family have limited time to secure the funds (their fundraising page, with a £45,000 target figure, is currently just over £16,000) and a long way to go.
But they are determined to get there, claiming they have to give Emily this opportunity.
“It means absolutely everything to us that Emily is given this potential opportunity to walk,” Mrs Fitzgerald-Crook said.
“Without it she will be wheelchair dependant for the rest of her life, her legs will become more contracted and her pain will only increase.”
She added: “We want to be able to tell Emily and Erin when they are older that we tried everything we could to enable Emily to be able to walk.
“The surgery is life changing for all of us. We have no other option, we owe it to Emily to get her this operation.”