Hi everyone thank you for taking the time to have a look at Olivia’s page. My name is Julie and l have the privilege of being the mother to a very special little girl Olivia. She is 9 years old has the most beautiful smile and loves singing and dancing when well.
I know all children are special and unique in their own way, however our Olivia is that wee bit more special. 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 7 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 in 2021, unfortunately 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 at the cost of £810 per month.
Since commencing this medication Olivia’s quality of life has improved significantly, she is back at school for full days and engaging in learning. She has also joined the school choir and performed in the schools summer production of “FrAnnie”
Albeit there has been significant improvement since Olivia started the non NHS medication she still faces significant challenges as she is not yet seizure free.
In order to maintain this quality of life for Olivia, that most people can take for granted for their kids, we literally have a huge price to pay every month. Maintaining this cost is very difficult, we have family support and organise fundraising events.
I had to change my full time career to meet Olivia’s current needs and her dad now has to work two jobs.
I know financially things are 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. Below is a link to Olivia’s story in a newspaper article. https://www.dailyrecord.co.uk/news/scottish-news/glasgow-girl-epilepsy-doose-syndrome-27132065.amp
I know all children are special and unique in their own way, however our Olivia is that wee bit more special. 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 7 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 in 2021, unfortunately 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 at the cost of £810 per month.
Since commencing this medication Olivia’s quality of life has improved significantly, she is back at school for full days and engaging in learning. She has also joined the school choir and performed in the schools summer production of “FrAnnie”
Albeit there has been significant improvement since Olivia started the non NHS medication she still faces significant challenges as she is not yet seizure free.
In order to maintain this quality of life for Olivia, that most people can take for granted for their kids, we literally have a huge price to pay every month. Maintaining this cost is very difficult, we have family support and organise fundraising events.
I had to change my full time career to meet Olivia’s current needs and her dad now has to work two jobs.
I know financially things are 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. Below is a link to Olivia’s story in a newspaper article. https://www.dailyrecord.co.uk/news/scottish-news/glasgow-girl-epilepsy-doose-syndrome-27132065.amp