Brave Gabby to TRYathlon again
Every red and blue shirt to leave the start line at this weekend’s Weet-Bix Kids TRYathlon in Nelson has a why. In the case of Stoke nine-yearold Gabby Stephens, being able to line up for her second TRY event could be considered a how.
The Enner Glynn School pupil has a rare premature ageing disorder known as dyskeratosis congenita (DC), and is thought to be the only person in New Zealand with it.
Essentially, Gabby is ‘‘a nineyear-old in a 90 year-old’s body’’, with the bone density of an elderly woman who suffers joint aches and pains.
Tiredness is another common symptom. Her bone marrow struggles to produce enough blood cells, her fingernails and toenails are falling off, and she has age spots on her skin, which is paper-thin.
There is no cure for the condition.
Two other Nelson families have had children with the same disorder. However, they have since died.
‘‘Most people with the disease are lucky to reach their 20s,’’ Gabby’s mother Megan said.
To make her situation all the more tricky, Gabby has been on crutches this week after injuring her foot.
‘‘We’re not sure how she hurt it – she says it was putting her shoe on. [There’s] no obvious fracture, but she can’t weight bear,’’ Megan said.
Despite all of this, Gabby is raring to tackling the 100-metre swim, four-kilometre cycle and 1.5km run at Ta¯hunanui Beach tomorrow morning, cheered on by her mum, dad Andrew and older siblings Lachlan, 12, and Ruby, 14.
Gabby completed the TRYathlon last year for the first time, and was adamant that she would do it again.
While she finds it tiring, and finds the running and swimming part hard, she said she was confident of a strong bike leg.
Five years ago, Gabby had a bone marrow transplant, with her brother Lachlan being the donor. This weekend, Lachlan has offered to piggyback his sister around the course if necessary. ‘‘He’ll make a race out of it,’’ Gabby said.
This TRYathlon season, Haier Appliances is recognising special participants and volunteers, and Gabby is among them. The company has offered Gabby family a fridge for her fundraising efforts and for her determination to participate in the TRYathlon event despite her health battles.
This year, Gabby is raising funds through the TRYathlon to travel to the United States with her mother in May to visit Camp Sunshine in Sebago Lake, Maine, where other children from around the world with her condition get together.
She’s also planning to channel 50 per cent of the funds she raises towards research for her disease through Team Telomere, a US-based organisation supporting families worldwide in their battle with dyskeratosis congenita and related telomere biology disorders.
This will be her third trip to the camp, which will also include a visit to Boston Children’s Hospital, where Gabby attends a specialist clinic that would not otherwise be available to her in New Zealand, due to the rare nature of her condition.
She will meet some friends in person for the first time, including a young girl from England with the same gene mutation as her.
Sadly, there will also be some kids absent from the five-day stay – taken too soon by the effects of DC.
‘‘Not going isn’t an option. We’ve always talked about going as a family or not at all, but it is hard fundraising that amount every time, so just me and Gabby will go this time,’’ Megan said.