Olivia’s medical fund

Hey everyone thank you for taking the time to have a look at our page. My name is Diane and l have the privilege of being the auntie to a very special little girl Olivia. She is 8 years old has the most beautiful smile and loves singing and dancing. I know all children are special and unique in their own way however our Olivia is that wee bit more special than most.

Olivia has Doose Syndrome which is a very debilitating form of childhood epilepsy. On her worst days she can have up-to 300 seizures per day. The seizures can be of different types. They include jerks (myoclonic seizures), sudden falls to the ground (tonic or atonic seizures), or sometimes a jerk followed by a fall (myoclonic-astatic seizure), absence seizures (when consciousness is lost briefly). On some occasions she has seizures with stiffness and jerking of the whole body (generalised tonic-clonic seizure). Approximately one third of children with myoclonic-astatic epilepsy will have prolonged seizures at some time during childhood or adolescence. This can include non-convulsive status-epilepticus which can be life threatening and increase her risk from SUDEP (Sudden Unexpected Death in Epilepsy. Unfortunately Olivia is one of the third and has been hospitalised numerous times in status.

In order to try and control her seizures Olivia has over the past 6 years been on various groups of medications provided by the NHS, all of which have proven to be unsuccessful. She is also on a very strict Keto diet and had brain surgery last year however that was also unsuccessful.

The only hope of trying to control her seizures and giving her a chance at a normal, healthy life is to have her prescribed a medication that is not currently funded by the NHS.

Olivia is currently being prescribed this medication  from a private clinic. She is on a very low dose of one of the cheapest brands they offer which costs £390 per month.

Early indications are that it is working for her as the number of seizures she takes has reduced and she is much more alert and engaged than she has been  over the past six years when she was on the NHS medications. However, as the dosage increases the more expensive the medication becomes and it may even be necessary to change brand to one of the more expensive medications. This means her medical costs could rise to over £1000 per month.

At present her mum and dad are meeting the financial cost by cutting back on everything and paying it themselves. They are both keyworkers and the additional cost is putting an additional strain on them and they are very concerned about how they will fund the cost of increase in the medication as the dosage increases.

So lve decided to set up this just giving page to try and raise funds for Olivia. As a family we offer as much financial and practical support as we can but we can’t fund the medical costs alone. I know financially things are very difficult for everyone at present and that the rising cost of living is of concern for us all however, any donation that you can afford to make will be greatly appreciated.

Thanks again for reading our page about our amazing girl and her awesome parents whom l cant explain how much l admire. Please keep them in your thoughts and prayers and share our link in your social media contacts.

Diane