Hornchurch boy with extremely rare brain tumour smiles before having seizures
PUBLISHED: 07:00 13 October 2016 | UPDATED: 09:23 13 October 2016
A family is desperately attempting to raise £100,000 for their “cheeky, little boy” after being refused funding for a life-changing procedure.
Seven-year-old Nathan Box, of Hornchurch, was struck down with the mystery illness two years ago when his parents noticed something was wrong while on holiday.
Doctors initially believed Nathan had Epilepsy, but after numerous tests over the course of months, the family were told the Hacton Primary pupil had a very rare condition known as Hypothalamic Hamartoma.
It means Nathan suffers every day with up to 25 different types of epileptic seizures.
The strange side affect of the condition means little Nathan smiles just before having one of his seizures.
Since discovering the medical implications, the family have been fighting hard to get treatment, which is only available in Texas, USA.
But the family have been told the NHS will not fund the treatment.
Unless they can find the money for the operation, Nathan will spend the rest of his life taking medication that can only lessen the symptoms, but not cure them.
Mum Susan said: “Its heartbreaking, the treatment is in touching distance but there is nothing more we can do.
“The treatment has cured so many little children but Nathan can’t be one of them for now and that’s upsetting.
“We could wait for the equipment to come to the UK but nobody knows when that will be and where Nathan would be in the pecking order.”
Susan has hailed her son for his “tremendous inner strength” as the condition never gets to him.
“Nothing bothers him, he can’t remember his seizures so he continues on like his normal, happy, giggling self,” she said.
“It is hard to see as a family because nothing phases him so it can be worrying.
A spokesman for Great Ormond Street Hospital said: “Hypothalamic Hamartoma is a very rare, complex neurological condition, and the expert team here at GOSH is working closely with Nathan and his family to provide on-going specialist care.”
The family are now attempting to raise the money to fund the life-changing procedure in the US with events at Nathan’s school planned to help.
Next Thursday, the school will be holding a non-uniform day with pupils donating £1 to Nathan’s cause.
Anyone wishing to donate, can visit https://www.justgiving.com/crowdfunding/nathan-box.