Mother’s plea for help for her daughter Haven
‘‘I'm just a mum who wants what's best for my daughter. 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.’’
Morrinsville mother Brenda Jones knew life was going to change forever as she sat with her baby girl motionless in her arms.
The convulsing had stopped, but two-year-old Haven’s lips were turning purple and she was choking.
Her first seizure at 11.15pm on June 10 would be the start of a terrifying journey for both mum and daughter, who now suffers as many as 200 per week.
Haven now has to wear a special helmet when playing outdoors to protect her head when the seizures strike.
They range from the violent tonic-clonic or convulsive seizures to atonic seizures, also known as drop attacks and myclonic jerk seizures or absent seizures, which leave the preschooler simply staring into space.
‘‘The child we knew has just totally gone altogether,’’ Jones said.
Haven’s ‘‘safe place’’ is a padded room with foam noodles and layers of soft cushions or blankets on top of tables and hard surfaces to prevent the black eyes, cut lips and other injuries Haven has sustained when a drop seizure strikes.
Haven has been unofficially diagnosed with a rare form of epilepsy called Lennox-Gastaut Syndrome and has since trialled four different types of anti-epileptic medication.
But five months on, after visits to numerous doctors and medication side effects including severe aggression, and different types of seizure developing with every new medication, Jones has reached breaking point.
‘‘I’m just a mum who wants what’s best for my daughter.’’
Treatment still remains unclear but Jones, hoped a specialised Ketogenic diet prescribed by doctors and training in it at Starship Hospital could help reduce seizures, but says more drastic steps such as surgery may be needed.
‘‘Worst case scenario, children like Haven who don’t get their seizures under control, you are looking at surgery.’’