Eastbourne family shares story of three-year-old Jude in need of life-changing operation
An Eastbourne family is raising £80k to fund life changing treatment for their three-year-old.
Jude, who has spastic diplegia cerebral palsy, needs a life changing operation called selective dorsal rhizotomy to help him walk and live a pain free life.
Unfortunately, Jude narrowly missed out on NHS funding for the operation.
His devoted mum and dad, Sadie and Neil Belgrave, both nurses, are now desperately trying to raise the money to pay for the operation privately.
Sadie said, “Jude is considered too severe to be helped by the NHS – despite him being assessed by both the leading neurosurgeons Dr Park and Dr Aquilina and both saying he is a good candidate for the surgery and will greatly benefit from having the procedure.”
The family has set up a crowdfunder called Jude’s Giant Steps to pay for the operation privately either at the London Portland Hospital or St Louis Children’s Hospital in America.
Sadie added, “The money we need to raise is for the surgery itself and for the extensive and vital post operative physiotherapy programme that is required afterwards.”
In just three short years, Jude and his family have been on a heartbreaking and life-changing journey and are sharing their story with the Herald.
Sadie said, “Jude is a surviving identical twin and he was born nine weeks early.
“I had a rare complication called twin-to-twin transfusion syndrome that was discovered at 20 weeks during my pregnancy .
“We were told by specialists that the only thing that could be done was to have placental ablation surgery, which may result in the loss of one twin.
“But if we did nothing both would die. Jude’s twin brother that we named Zachary did not survive. We were also told that if this happened Jude would arrive early.
“Completely heartbroken that things had gone wrong I had to continue my pregnancy for as long as I could.
“I had two haemorrhages and following the second one Jude was delivered at 31 weeks by emergency C-section.
“We didn’t even have a chance to see him when he was born as he was in a critical condition.
“Jude had several blood transfusions and had to be artificially ventilated for the first two days. After this he rallied and we spent the next five weeks in the special baby care unit trying to feed him orally, then we were finally able to bring him home.”
However, the family’s ordeal was still not over, because as Jude grew older they became concerned about his physical development.
Sadie said, “When he was nine months old he was still unable to sit up and roll over.
“We became increasingly concerned about his developmental delays and a brain scan was arranged. the MRI confirmed white matter damage in the brain - known as periventricular leukomalacia this can lead to cerebral palsy.
The family described the news as ‘shattering’.
Sadie added, “It was when the phone call came through with the shattering results suggesting Jude might not ever walk or talk that our world began to collapse.”
At 18 months, Jude was diagnosed with spastic diplegia cerebral palsy. This means a large area of his brain that controls motor function is irreversibly damaged.
Jude is now three but he is unable to crawl, stand or walk independently.
Sadie added, “Neil and I struggled to come to terms with the diagnosis and the loss of his twin but when I discovered I was expecting another baby soon after we were able to feel a degree of joy again and this allowed us to look to the future, even with so much uncertainty.”
Tristan was born 11 months after Jude.
Sadie said, “The last three years have been extremely tough, juggling our careers as nurses with the demands of managing two young children with very different needs - Tristan is 11 months younger than Jude.”
The family has done all they can to learn about cerebral palsy to help Jude with the disorder and help his physical development.
As a result of that research, Jude has been attending Whoopsadaisy, a Brighton-based charity, as every week for the last two years.
Jude has built on so many skills and the family has seen improvements in his mobility and speech.
Sadie added, “We met other parents with children with cerebral palsy and this made us feel less isolated.”
The surgery, called selective dorsal rhizotomy, can permanently remove the stiffness of muscles which improves mobility balance and posture. This then relieves the constant pain a child with cerebral palsy experiences.
Sadie and Neil say the surgery, which Jude has been accepted for both here in the UK and in the USA, is ‘a must’ and will give him greater independence and mean he does not have to permanently rely on a wheelchair.
Sadie added, “Despite everything he has already been through in his short life he is rather an extraordinary little boy. He has so many strengths despite the challenges and has so much potential to live a full life.
“It is our wish to be able to give him this one big chance, to be able to achieve so much more than what has originally been predicted for him.”
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