Hazel needs our help
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.