Hazel needs our help

Auckland City Harbour News - - FRONT PAGE - By JESS LEE

NICK Smith and Nikki West don’t know how much time they have left with their lit­tle girl.

A cruel ge­netic dis­ease will even­tu­ally paral­yse 18-month-old Hazel who has spinal mus­cu­lar at­ro­phy (SMA).

The con­di­tion de­stroys nerves con­trol­ling mus­cle move­ment and has stopped her from ever crawl­ing, walk­ing or sit­ting up.

It takes the lives of six New Zealand chil­dren ev­ery year.

But the Kings­land fam­ily hopes Hazel will defy the odds and is try­ing to raise enough money to im­prove her qual­ity of life.

‘‘It’s just the most dev­as­tat­ing thing you could ever hear as a par­ent, that some­thing like this is wrong with your lit­tle girl,’’ Ms West says.

‘‘But you hear of some who live longer, so we are hope­ful that she’ll get through it.’’

The par­ents need to in­stall a lift in their home and adapt the bath­room to cope with Hazel’s needs.

‘‘Mod­i­fy­ing this place is our best op­tion be­cause of the won­der­ful flex­i­bil­ity of hav­ing Hazel’s grandma as the land­lord, so there’s no risk of us hav­ing to move out or the rent go­ing up too much,’’ Ms West says.

The fam­ily has re­ceived a govern­ment grant of $15,000 to­wards the costs but needs to find about $20,000 more to com­plete the work.

Hazel ex­hibits symp­toms of both SMA type 1 and 2, leav­ing doc­tors un­able to pre­dict what the fu­ture holds for her.

Chil­dren di­ag­nosed with SMA type 1 are not ex­pected to live past two years of age, while some with type 2 can sur­vive well into adult­hood.

The dis­ease does not af­fect cog­ni­tive func­tion but it does make Hazel phys­i­cally vul­ner­a­ble. Even catch­ing a com­mon cold from her par­ents or her 3-year-old brother could make her con­di­tion de­te­ri­o­rate quickly.

Hazel was di­ag­nosed at nine months old and at first her mother was in de­nial.

‘‘I was hop­ing that she was just slow to de­velop. When I took her to the doc­tor, she could tell I wasn’t ready to hear it.’’

Tina Bell, who of­fers sup­port to other fam­i­lies af­fec- ted by SMA, says find­ing people to talk to when a child is di­ag­nosed is one of the many chal­lenges par­ents face. She lost her ninemonth-old daugh­ter Ty­lah to the dis­ease in 2006.

‘‘It took me a long time to call the num­ber I was given but I’m so glad I did, it made a big dif­fer­ence,’’ she says.

‘‘They are the only people who can un­der­stand what you’re go­ing through.’’

Mr Smith says they’re overwhelmed by the sup­port they have al­ready re­ceived through their fundrais­ing page.

‘‘It’s re­ally blown me away. It’s been a mas­sive sur­prise

on­line how gen­er­ous people have been.’’

Go to givealit­tle.co.nz/ /cause/give­haze­lalift.

Look­ing ahead: Hazel Smith has spinal mus­cu­lar at­ro­phy which means she will never crawl or walk and the dis­ease will pro­gres­sively paral­yse her.

Strong fam­ily: Nick Smith and Nikki West with their chil­dren Bill, 3, and Hazel, 18 months.

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