Katie’s brave battle goes on
LISA Archer knows first-hand how isolating it can be to have a child with a rare and fatal disease.
Late last year Mrs Archer and husband Brett were told their youngest daughter Katie had late infantile Batten’s disease, an extremely rare genetic disorder shared by only one other person in the country.
Batten’s is a degenerative neurological condition where an accumulation of lipids in the brain lead to cell death.
The disease will slowly rob the 4-year-old of her sight, take control of her body and mind, and by the age of 10 it will likely have taken her life. There is no treatment for the condition.
When the Auckland City Harbour News spoke to Mrs Archer in October, she said they had spent ‘‘a lot of time crying’’ about their daughter’s rapidly deteriorating health.
Four months on and the motherof-three says life is ‘‘less hectic now’’ that they have come to terms with the diagnosis.
‘‘ ‘This would never happen to us’ has gone out the window, we are in a whole new world dealing with a child whose death is unavoidable,’’ she says.
They have watched their daughter go from running in the playground to barely being able to walk unaided. She cannot speak and she wears a safety helmet to protect her from constant stumbles.
While it is uncertain whether Katie will be able to attend school when she turns five, the family have made plans for her to attend a specialist school equipped for wheelchairs.
‘‘She is not in a wheelchair yet, she can stand and hold my hand and walk along, but I imagine by the time her birthday comes in June she will be,’’ Mrs Archer says.
‘‘The specialist schools are geared up for that.’’
Katie spends her mornings at daycare, getting in some good playtime and giving her parents a welldeserved break.
The Grey Lynn couple also found much-needed support from charitable trust Lysomal Diseases New Zealand.
The trust assisted the Archers to travel to Australia to attend a Batten’s meeting where they could meet other people affected by the disease.
‘‘When kids have a condition where they might be the only one in Auckland or even New Zealand with it, it can be really isolating,’’ she says.
‘‘People don’t really know or understand. I mean I hadn’t heard about Batten’s until Katie was diagnosed with it.’’
Mrs Archer is appealing to people to show their support for causes like Lysomal Disease New Zealand for Rare Diseases Day tomorrow.
There are more than 7000 rare diseases that affect 8 per cent of the population.
The annual campaign is held around the globe to recognise patients that are ‘‘often orphans of the health system’’.
According to the New Zealand Organisation for Rare Diseases around 50 per cent of rare diseases have no specific foundation to support or research the condition.
So this year the organisation decided to go to bat for small groups supporting those with very rare conditions, rather than focus on its own fundraising.
Executive director John Forman says part of its mission is to help support groups operate effectively.
‘‘Rare Disease Day is the perfect opportunity for us to give a leg-up to groups who often struggle for attention to their disorder in the health system,’’ he says.