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rett syndrome picture About Rett Syndrome - What is Rett Syndrome - Rettsyndrome.org
About Rett Syndrome – What is Rett Syndrome – Rettsyndrome.org | rett syndrome picture

STUFF

Nelson’s Ayla-Rose was diagnosed with Rett Syndrome aback she was aloof 9-months old.



For best of us, a cruise to the bank is abridged afterwards a airing through the bank and a paddle in the sea.

For the ancestors of Ayla-Rose Wagner, the Nelson summer agency annoying about whether their earlier adolescent can adore a day out as abundant as the kids about her.

Like most kids her age, eight-year-old Ayla-Rose loves school, pond and TV appearance Shaun the Sheep –  not necessarily in that order.

She also has Rett Syndrome, acceptation she is unable to walk, talk, suffers from seizures and additionally has a scoliosis, or curvature of the spine, and breathing issues.

Virginia Woolf/ Stuff

rett syndrome picture NZORD - Rett syndrome
NZORD – Rett syndrome | rett syndrome picture

Jess, left, and Chris Wagner are acquisitive to accession abundant funds to get Ayla-Rose a Hippocampe bank wheelchair for summer.

“She developed commonly for the aboriginal nine months and afresh she didn’t rollover like added kids and couldn’t clamber or annihilation – we went to a few specialists and did some tests which all came aback accustomed – it wasn’t until they beatific some claret tests abroad that they came aback with Rett Syndrome,” said her mum Jess.

“When she was about 17 months old she apprentice to clamber and could cull herself up, but now she can’t do that or sit up by herself.”

“I assumption as she gets earlier it’s accepting harder on her anatomy and to manoeuvre her around, and she gets annoyed absolutely easily.”

The difficulties faced in affective Ayla-Rose continued to carrying her about the beach. She can no best sit by herself so is clumsy to sit in the baptize and play.

On visits to bounded beaches like Tahunanui and Kaiteriteri, Ayla-Rose’s abundant wheelchair meant he was generally getting left abaft or missing out on arena with ancestors Amy (1) and seven-year-old Travis.

“We’ve consistently gone to the bank as a ancestors but trying to advance her beyond the bank and aggravating to attending afterwards two added baby kids at the aforementioned time … even getting Ayla into the water is a bit of a struggle,” said her ancestor Chris.

With summer about the corner, the ancestors accept started a give-a-little page to get Ayla-Rose a  new all-terrain Hippocampe wheelchair so she is able to adore the bank and booty an alive allotment in family outings.

rett syndrome picture Rett syndrome Presentation
Rett syndrome Presentation | rett syndrome picture

Chris said the Hippocampe would allow her to be calmly pushed on the bank and could also float in the water.

Jess had been fabricated acquainted of the Hippocampe through accompany with appropriate needs children.

“I’ve apparent photos of them application endemic and at the time Ayla was still at that age area it was accept to backpack her … but now we’re actively attractive into it.” 

The ancestors had contacted a NZ company, Bank Wheels, to advice antecedent the new chair.

Supplied

Someone who has already begin the allowances of the Hippocampe is North Shore Bookish Attached dead Finlay Butcher.

So far, through the give-a-little page, $1030 has been donated appear the cost, which was estimated at amid $6000-8000.

“Ayla’s action is not like an ACC action – allotment has to be clandestine – we try to do things ourselves, but it all comes bottomward to dollar value at the end of the day,” Chris said.

rett syndrome picture NZORD - Rett syndrome
NZORD – Rett syndrome | rett syndrome picture

“We alive in a appealing admirable country, so we don’t appetite to bind her and accept her ashore at home watching TV all day.”

Virginia Woolf/ STUFF

The Wagner family, 12-month-old Amy, left, Jess, Chris, Ayla-Rose, and 7-year-old Travis. Ayla-Rose’s abundant wheelchair meant she was generally accepting larboard abaft or missing out on arena with Amy and Travis.

“As she’s accepting earlier it’s accepting harder to action the actuality that maybe we ability accept to ask for advice every now and again,” Jess said.

The allowances of the armchair were highlighted in 2015 by North Shore bookish attached sufferer Finlay Butcher, who received his own armchair with the advice of his bounded community.

“You could see his little face as the baptize was advancing in, he was so excited,” his mum Kimberley Graham said in 2015.

 – Stuff

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