Appeal to raise £100,000 to fund Texas brain surgery for Jaydan, 12
A family from Letchworth whose son has seizures every day are trying to raise £100,000 to fund brain surgery in the United States.
Jaydan Nerr, 12, was diagnosed with a brain tumour called Hypothalamic Hamartoma in 2008, when he was four years old – and suffers up to 10 types of seizure a day, including epileptic, complex-partial, gelastics and tonic-clonic seizures.
Not only does Jaydan have to put up with a cocktail of strong epileptic drugs every day, his constant seizures regularly lead to him hurting himself.
Jaydan, who used to go to Stevenage’s Round Diamond Primary School, has also been diagnosed with autism, ADHD and ODD, all of which are linked to his condition.
His dad Raj said: “For the past three years we have been following the suport and guidance of Great Ormond Street Hospital, who put an application in to NHS England to fund the only curable treatment available for this rare condition – which is only available in Texas.
“The last three years have been a very difficult period, managing Jaydan’s condition as the symptoms worsen. The meds now have less effect.
“We had fought hard and put all our hope on the NHS to secure funding and offer the treatment – only to be given the devastating news in November, after a long wait, that the funding application was refused and that NHS England will not fund his treatment.”
The Nerr family moved from Letchworth to Stevenage in 2012, then to Bedford two years ago for Jaydan’s schooling. They have so far raised £10,000 towards their £100,000 target to change their son’s life.
Raj said that another young boy with the same rare condition, who was refused NHS funding for this treatment, is now “cured and seizure-free” after having the treatment in Texas last month – with the help of a similar crowdfunding effort.
“This news has given us renewed hope, a chance for our Jaydan to be cured, to live a normal life and do the things all other kids do,” said Raj.
“We are asking people to open their hearts and help give our son a chance of being seizure-free and to live a normal life.”
To support the Nerr family, see justgiving.com/crowdfunding/jaydan-nerr.