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Members of Kaiapoi-based dance group “Hot Mamas” have been in training to run the Saint Clair Vineyard half marathon, which was due to be held in Marlborough on May 9, to raise funds for four-year-old Amaria (Riri) Emery, who has a rare developmental condition.
The event has been cancelled in the wake of the global coronavirus pandemic, but the group's members are continuing to run in isolation and hope to run 21km closer to home on May 9, Riri's mother Stephanie Emery says.
“Hopefully, we will still do it (Saint Clair half marathon) next year, but in the meantime we are continuing to train on our own and depending on what we can do on May 9, we hope to be able to get together and run the 21km, otherwise we will run individually around our own neighbourhoods.”
Riri, who turns 5 in May, has a rare condition known as CDKL5 deficiency, where the body is unable to produce the protein responsible for providing instructions for brain function and development.
CDKL5 deficiency, which stands for cyclin-dependent kinase-like 5, has a number of symptoms including uncontrollable epilepsy, results in a compromised immune system and requires a specific keto diet, Stephanie said.
“It's quite stressful at the moment getting the right foods. We're trying to avoid going to the supermarket because it's too high risk.”
Stephanie says they are trying to make the best life possible for Riri.
“She will never leave home. The best we can hope for is that cognitively she can be like a one-year-old. She is severely brain-damaged in terms of her cognitive function.
“We would love to get her to a stage where she can make a few steps.”
Stephanie is still hopeful a specialist therapist can make the trip over from Adelaide in September.
“If he doesn't come in September we will look at going over next year or we may have to do some Skype sessions.”
In spite of her limitations, Stephanie says Riri is an inspiration.
“I'm not a runner, but if we can push Amaria every day, then I need to push myself. She works so hard, so I decided to push myself and do the half marathon too.”
While a mass gathering is not possible, Stephanie says anyone wanting to support Riri can follow “Running for Riri” on Facebook, or find the “Run for Riri – half marathon fundraiser” Givealittle page.
The fundraising is to help with the extra costs associated Riri's condition.
As well as a trip to Adelaide to see Riri's therapist, the family also hopes to raise $5000 to buy an all-terrain buggy.
“It's not something we can get from the Government and it doesn't qualify for many grants. Without it she can't go to the beach or go on bumpier terrain and we want to be active as a family.”