Reality of life with 200 seizures a week
Another treatment option was medicinal cannabis oil, but the issue was lack of funding.
‘‘I’m just a mum who wants what’s best for my daughter,’’ Jones said.
‘‘I believe her best chance lies with the medical diet.’’
Jones said she had been frustrated about a perceived lack of coordination between different district health boards who were handling Haven’s care.
Waikato Hospital paediatrician Dr David Newman said the Waikato DHB could not comment Haven’s case specifically, but say they are happy to work directly with the family to find the best treatment options available.
‘‘In terms of standard practice we can however confirm that where patients are referred and accepted between DHBs for an inpatient event then funding will automatically transfer between DHBs through inter-district flow arrangements,’’ Newman said.
‘‘There is also financial support provided in relation to transport and accommodation.’’
In the meantime, day-to-day life for Jones consists of carrying emergency rescue medication and a phone everywhere, counting seizures, filling out a food diary and catching her daughter every time she drops.
‘‘We have become isolated, a lot of people don’t know what to do when Haven has a seizure, it’s traumatic for them and I understand that.’’
Jones is adamant that she wants her daughter to have as normal life as possible with every opportunity to play and learn.
She hoped to return to full time work at the end of the year but is now Haven’s full time carer and an Epilepsy Awareness advocate committed to Haven’s quality of life.
But with every seizure comes the threat of serious brain dam- age or sudden unexplained death in epilepsy.
Jones uses every spare moment she has to research treatments, send emails, find names and contact phone numbers of people and organisations that may be able to help. MumBrenda Jones talks about her daughter Haven. Visit Stuff.co.nz to watch the video.
‘‘This is our fight. I want to be a role model for my daughter and show her that some times you have to stand up and fight,’’ she said.
‘‘I never imagined that this would be our future but every day we wake up with hope.’’