A Bedford family have turned to crowdfunding to fund the expensive costs of treatment for their 12-year-old son who suffers with a rare condition called Hypothalamic Hamartoma.
Jaydan Nerr was diagnosed with the condition in 2008 at the age of 4.
Hypothalamic Hamartoma is a rare malformation or tumour in the brain and victims will display symptoms of suffering with the condition from an early age.
In Jaydan’s case, father Raj says the condition leaves his son suffering “every day with different types of epileptic seizures, gelastics, complex-partial seizures, drop attacks, tonic-clonic seizures; any combination will happen everyday resulting in him having anywhere up to 10 seizures a day.”
On the Justgiving website where the family have launched the appeal, Raj said, “He has to tolerate a cocktail of strong epileptic drugs daily which have their own side effects and though these meds will only help reduce the number of seizures, they won’t stop them and he will have to take these for the rest of his life regardless.”
He added, “he has recently been diagnosed with Autism, ADHD and ODD which are all linked to the condition.”
The family had hoped that the NHS would fund the treatment, which is only available in the United States.
Great Ormond Street Children’s Hospital supported the family and put an application to the NHS for the funding.
Unfortunately, after a long wait, the family were informed in November last year that their application had been rejected, leaving them devastated after a difficult three-year period in which Jaydan’s condition worsened.
However, Raj said that the family learnt of another young boy with the same condition whose family turned to crowdfunding.
He said, “Another young boy who has the same rare condition as Jaydan was also refused funding for the same treatment, his parents managed to raise the required funds through crowd funding.
“The boy successfully underwent the treatment last week in Texas and he is cured and seizure free.”
Raj says the news has given his family “renewed hope” and is optimistic that his son can be cured and “live a normal life and do the things all other kids do.”
At the time of the writing of this article, the family has raised almost £9,000 of their £100,000 target.
You can read more about Jaydan’s story and donate yourself by clicking here.
