Our son Jaydan who is 12 years old who lives with a rare condition - Hypothalamic Hamartoma which was diagnosed in August 2008 when he was 4 years old. He suffers 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. 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 has recently been diagnosed with Autism, ADHD and ODD which are all linked to the condition.

For the last 3 years we have been following the support and guidance of Great Ormond Street Children’s Hospital who put an application to NHS England to fund the only curable treatment that is available for this rare condition which is only available in Texas, USA. The last 3 years it has been a very difficult period managing Jaydan’s condition as the symptoms worsen and the meds have less effect, we had fought hard 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. At the same time 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. 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. So….. here 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.

Please feel free to contact us if you require any further information.

Many thanks.