Putting the beach within reach
For most of us, a trip to the beach is incomplete without a stroll through the sand and a paddle in the sea.
For the family of Ayla-Rose Wagner, the Nelson summer means worrying about whether their eldest child can enjoy a day out as much as the kids around her.
Like most kids her age, eight-yearold Ayla-Rose loves school, swimming and TV show Shaun the Sheep – not necessarily in that order.
She also has Rett Syndrome, meaning she is unable to walk, talk, suffers from seizures and also has a scoliosis, or curvature of the spine, and breathing issues.
‘‘She developed normally for the first nine months and then she didn’t rollover like other kids and couldn’t crawl or anything – we went to a few specialists and did some tests which all came back normal – it wasn’t until they sent some blood tests away that they came back with Rett Syndrome,’’ said her mum Jess.
‘‘When she was about 17 months old she learn to crawl and could pull herself up, but now she can’t do that or sit up by herself.’’
‘‘I guess as she gets older it’s getting harder on her body and to manoeuvre her around, and she gets tired really easily.’’
The difficulties faced in moving Ayla-Rose extended to carrying her around the beach. She can no longer sit by herself so is unable to sit in the water and play.
On visits to local beaches like Tahunanui and Kaiteriteri, AylaRose’s heavy wheelchair meant she was often getting left behind or missing out on playing with siblings Amy (1) and seven-year-old Travis.
‘‘We’ve always gone to the beach as a family but trying to push her across the sand and trying to look after two other small kids at the same time ... even getting Ayla into the water is a bit of a struggle,’’ said her father Chris.
The family have started a givea-little page to get Ayla-Rose a new allterrain Hippocampe wheelchair so she is able to enjoy the beach and take an active part in family outings.
Chris said the Hippocampe would allow her to be easily pushed on the sand and could also float in the water.
Jess had been made aware of the Hippocampe through friends with special needs children. ‘‘I’ve seen photos of them using theirs and at the time Ayla was still at that age where it was OK to carry her ... but now we’re seriously looking into it.’’
The family had contacted a New Zealand company, Beach Wheels, to help source the new chair.
So far, through the give-a-little page, $1030 has been donated towards the cost, which was estimated at between $6000-8000.
‘‘Ayla’s condition is not like an ACC condition – funding has to be private – we try to do things ourselves, but it all comes down to dollar value at the end of the day,’’ Chris said.
‘‘We live in a pretty beautiful country, so we don’t want to restrict her and have her stuck at home watching TV all day.
‘‘As she’s getting older it’s getting harder to fight the fact that maybe we might have to ask for help every now and again,’’ Jess said.
The benefits of the chair were highlighted in 2015 by North Shore cerebral palsy sufferer Finlay Butcher, who received his own chair with the help of his community.
‘‘You could see his little face as the water was coming in, he was so excited,’’ his mum Kimberley Graham said in 2015.
‘‘We live in a pretty beautiful country, so we don’t want to restrict her.’’
Jess Wagner