Katie’s brave bat­tle goes on

Auckland City Harbour News - - NEWS - By DANIELLE STREET

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.

Rare gem:

Newspapers in English

Newspapers from New Zealand

© PressReader. All rights reserved.