Two-and-a-half-year-old Alayna suffers from a range of complications caused by a gene disorder. To help ease some of them and provide some immediate relief, Satan’s Little Helper sent her a sensory swing!
Alayna has a rare genetic disorder called CACNA1A, which is a large gene on the 19th chromosome. Variations in it can cause neurodegenerative diseases and symptoms including intellectual disability, eye movement disorders, hypotonia and development delays, among others.
In Alayna, it manifests in cerebral palsy, low muscle tone, global development delay and eye movement disorder. Despite it all, her mum Nicole says she’s “a joyful little girl”.
“She touches the soul of anyone who is in her presence, literally bringing spontaneous tears to strangers who meet her. It’s not because of her disability. How she does it is hard to explain, but it’s in the way she looks at you, like she reaches out and grabs your soul with her eyes.”
Hard worker
Alayna has to go through vigorous physical therapy to try and help her become more mobile, which Nicole says she works hard at because she is so desperate to be involved in the world around her – especially when it comes to her two sisters!
“She tries so hard to play alongside her two older sisters and the sad reality is that she can’t, which is heartbreaking as a parent to watch. I would give everything to see that happen for her.”
Part of Alayna’s therapy included spending two weeks in an intensive programme at The Centre for Movement in Australia. Nicole says the results were “amazing” – but it’s a cost they can’t afford to repeat again without help.
“Alayna made such great gains and we, as parents, learned so much about how her body works and what exercises will benefit her to get her as independent as possible, which would be an incredible achievement for her.”
Reaching out
To help raise money, Nicole has started a GiveALittle campaign and is held a fundraiser in June to auction off vouchers donated by generous local businesses.
In the meantime, Satan’s Little Helper wanted to do something that would bring Alayna some comfort in the here-and-now, so, we got her a sensory swing!
Nicole says she has instantly taken to it and that it has also been beneficial for her eldest Aria, who is on the sensory processing disorder spectrum.
“Alayna loves using the swing in therapy, but we haven’t been able to buy her one, and Aria can also benefit from it, so it helps them both!”
A pleasant sensation
“When I say the girls love their swing; that is the world’s biggest understatement! They never want to get off it!”
The sisters enjoy the sensation that comes with a change in direction, position or movement in the head, which the swing enables. Both are are what is known as ‘vestibular input seekers’. Vestibular receptors are located in the inner ear and are activated by movement of fluid in the ear canals.
Nicole says vestibular stimulation can help with a range of things.
“It is effective in improving postural control, movements, emotional well-being, and social participation of children with hypotonic cerebral palsy like Alayna. It helps Aria with her emotional regulation and Auriah just loves to pretend like she’s superwoman!”
If you’d like to help, you can donate to Alayna’s GiveALittle. Click here.
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