Red Nose Day helps kids like Katie
With many diseases there is some sort of hope – a sliver of a chance that you will make it through another year.
Brett and Lisa Archer, the parents of 5-year-old Katie, would be happy with just a 5 per cent chance their daughter will live through the awkward teenage years to adulthood.
‘‘You would grab that 5 per cent. You would do anything to have that hope, but there just isn’t,’’ Mrs Archer says.
The Archer family is sharing Katie’s story to raise awareness about Cure Kids’ annual fundraiser Red Nose Day, where money is raised to help fund medical research.
Katie was an over-achiever in the first few years of her life.
She could run faster than boys three years older than her. She was the best at shooting hoops in backyard basketball, and she would clear her plate well before her two older siblings.
Now she can’t walk without support, has tunnel vision, and is fed through a nasal gastric tube, her body ravaged by the rare Batten disease, which she has no hope of surviving, ( Central Leader, February 27).
When Katie stopped developing normally and started having seizures, aged 3, her parents were told she had childhood epilepsy. ‘‘She’ll be right, we Archer says.
When the seizures continued and she rapidly deteriorated, a specialist said it could be late infantile Batten’s disease.
‘‘He said ‘ you will go home and you will google it and you will think, oh my God’.’’
The Grey Lynn family were eventually told she did have the neuro-degenerative disease, along with only a handful of other New Zealanders.
The disease is rare and
Mrs fatal – because of the lack of an enzyme, the brain can’t break down lipids so cells die, meaning normal functionality is lost.
‘‘She used to be able to say the alphabet, count up to about 15 . . . she could ride a scooter. Now she can’t stand on her own. She can walk with us helping her,’’ Mr Archer says.
The Archers know there is no hope for Katie. She is expected to be consumed by the disease before she rea- ches her teens, but they say there may be a chance for others in the future.
Cure Kids has funded University of Otago and Lincoln University research into optimising gene therapy strategies in Batten disease.
It was one of five projects to receive Cure Kids funding in 2012.
Rare disease: Brett and Lisa Archer with their daughter Katie who has a degenerative illness called late infantile Batten’s disease.