Our daughter, Nomi, was diagnosed with Epilepsy 5 years ago at the age of 12. She has tonic-clonic type seizures, as well as periodic absent seizures. As of September, 2019, she was also diagnosed as having NEAD (non epileptic attack disorder) a secondary disorder often associated with epilepsy. This means that Nomi has functional seizures that are not caused by electrical activity in the brain. She still collapses, convulses, experiences temporary paralysis, total exhaustion, but the doctors cannot treat these seizures with medication. Sadly these seizures can cause cognitive difficulties and memory loss which is badly effecting Nomi.on a daily basis?
How does this effect Nomi on a daily basis?
As these seizures cannot be treated by meds, she is at risk of having them at any given moment, of every day. Which basically means that when Nomi leaves in the morning to go to school, I am dressed, and ready, bag and keys on the table, afraid to take a shower, or go to the supermarket, in case I get the call that tells me that she has again begun seizing. When I do get that call it becomes a race to reach school in time to help her through her current seizure, (she can have anywhere between 1 to 10 consecutively) hold her until she is strong enough for the taxi ride home, and then console her while she cries in my arms that she wants to be a "normal" teenager, just like everyone else.
Her schoolwork is obviously suffering which we are struggling to keep up with, especially as she is taking the equivalent of her GCSE exams this year.
What does Nomi need?
After the 24 hour EEG video that Nomi had at Asaf HaRofeh hospital in Rishon Letzion, Dr Hyman, the leading neurologist working with epilepsy in Israel today, explained that the only way forward to help Nomi is for her to undergo a neuropsychological evaluation/test and simultaneous paediatric psychological, and Cognitive Behavioural Therapy. The evaluation is not covered by our medical insurance, and although Nomi is registered as being 100% disabled, the State will not subsidise the test as she is under 18. Since trying to set up this page we have also discovered that the psychological and CB therapy is not available to us in the south of Israel, so we would have to take a 5 hour round trip ( a whole day including therapy) to reach a specialist that could help Nomi. Unfortunately the travelling would counter any positive effect the treatment would have. So now our only option is a paediatric psychologist in a nearby town, again privately funded, and not covered by our medical insurance.
That is why and how we have come to this page. We are already exceeding our monthly budget paying for emergency taxis to and from school when Nomi seizes, private lessons, and private consultations with Dr Hyman (we receive financial assistance from our medical insurance for 3 consultations a year, and with Nomis current situation 3 is not enough).
The neuropsychological evaluation costs 5,000 shekels plus tax, which is 5,850 shekels (1,300 pounds). The immediate amount needed for treatment/therapy is 4,800 shekels, (1,050 pounds) broken down it is 400 shekels, once a week for the next three months. So in total, including charges here, we need 11,200 shekels (2,500 pounds).
For us it is an impossible amount of money to secure. Money, that without which, we have absolutely no way of helping our daughter get better and lead a normal life.