Red Nose Day helps kids like Katie

Central Leader - - NEWS - By SARAH HARVEY

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

thought,’’

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.

Photo: JA­SON OXENHHAM

Rare dis­ease: Brett and Lisa Archer with their daugh­ter Katie who has a de­gen­er­a­tive ill­ness called late in­fan­tile Batten’s dis­ease.

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