Mum’s fight

Better life sought for daughter suffering debilitating form of epilepsy. Katrina Tanirau reports.

WHENBrenda Jones picked up her motionless daughter Haven Holly, she feared she was dying in her arms.

The convulsing had stopped, but two-year-old Haven’s lips were turning purple and she was choking. It would be the start of a terrifying journey for bothmumand daughter. , who now suffers as many as 200 epileptic seizures per week.

Haven – who suffers uo tp 200 epileptic seizures a week – now has to wear a special helmet when playing outdoors to protect her head when seizures strike.

They range from the violent convulsive seizures to atonic seizures, also known as drop attacks and myclonic jerk seizures or absent seizures, which leave the pre-schooler staring into space.

‘‘The child we knew was gone altogether,’’ said Jones.

Haven’s ‘‘safe place’’ is a padded room with foam noodles and layers of soft cushions or blankets covering table tops and other hard surfaces to prevent the black eyes, cut lips and other injuries she has sustained from seizures.

Haven – from Morrinsville –was rushed to Waikato Hospital after the first seizure in June, and in the weeks that followed came an unofficial diagnosis of the rare form of epilepsy Lennox-Gastaut Syndrome. Haven has since trialled four different types of anti-epileptic medication.

But five months on, after visits to numerous doctors and medication side effects including aggression, and different types of seizure developing with every new medication, Jones has reached breaking point.

‘‘I’m just amumwho wants what’s best for my daughter.’’

Jones hopes a specialised diet prescribed by doctors will help reduce seizures, but says more drastic steps such as surgery may be needed.

Jones said she had been frustrated about a perceived lack of coordination between the different district health boards handling Haven’s care.

Waikato Hospital paediatrician David Newman said Waikato DHB could not comment Haven’s case, but it would be happy to help find the best treatment options available.

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 wants her daughter to have as normal a life as possible, with every opportunity to play and learn.

But with every seizure comes the threat of serious brain damage or death.

‘‘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.’’