Alana goes for gold in TRYathlon
Alana Blow will eventually be unable to compete in events like the Weet-Bix Kids TRYathlon.
She has Marfan syndrome - a rare, life-threatening condition which restricts the physical activities she can do.
The 7-year-old is excited to be taking part in the event at St Heliers on February 24.
It will be her second time doing it.
"It's really fun. I like it. The swimming was my favourite but last year I ran through the water because it was really cold."
Marfan syndrome is a hereditary disorder that affects the connective tissue holding the body together. Sufferers grow faster than normal which stresses organs, including the heart.
Alana is the height of an average 12-year-old. She celebrates her eighth birthday on Saturday.
The major risk for those with Marfan syndrome is the fatal swelling and rupturing of the aorta.
Patients are advised to limit physical activity from intermediate age, which means Alana's lifestyle will change completely in less than four years.
Alana's mother, Hannah, was born with the syndrome and knows the effects.
"These are her golden years really. We want her to make the most of it because she will be limited in her choices when she grows up."
Mrs Blow describes her youngest as "pure dynamite".
"She's all go. Even though she's the youngest of four she has no problem keeping up. She's not typical like other kids but she's not that different either."
Alana loves netball and swimming and wants to learn the drums.
The family is trying to encourage her into less physical hobbies, but at the moment the TRYathlon gives her daughter something special, Mrs Blow says.
"She can do sport now when it's not about pushing yourself. It's great for her self esteem."
There is a 50 per cent chance children will inherit the syndrome from a parent who has it. Alana is one of four children. One other has Marfan syndrome and another has Down syndrome.
"It's all variable . . . we're definitely a blended family."
Mrs Blow never considered not having children and says it's all about making life choices that suit the condition.
"My attitude is very much that I have had a great life. Yes, I was told at a young age not to do sports but I have been able to do everything else."
Mrs Blow's brother died from the syndrome at the age of 26 and her father at 46.
She says losing family members has made her ensure her children are getting the best care.
They belong to an American support group and Alana has regular check-ups with a paediatric cardiologist.
They also have to take a "cocktail" of medication to slow down any heart damage.
"We're not casual with it at all. But with good management, and if you take care of yourself, you can live into old age. That's not bad."
The TRYathlon is part sponsored by Fairfax Media, owner of this newspaper.
- © Fairfax NZ News
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