Laya’s Story

Laya is 5 and has a condition called Spinal Muscular Atrophy which causes progressive muscle weakness and she cannot stand, walk, crawl or sit unaided. Because of her lack of control of her neck and her general weakness she is mainly fed by a tube in her stomach to avoid choking.

She is a bubbly, bright little girl though who loves school and joining in as many activities as is possible, even though she is mainly on the sidelines watching.

When Action For Kids met her family Laya was using a borrowed wizzybug paediatric powered wheelchair as it was the only way she could get around independently. However it was far too small for her as it was built for a 2-year old and it had no back or neck postural support.

Her physiotherapist recommended the perfect wheelchair for her condition – the Dragon Mobility Snap Dragon Wheelchair but at almost £25,000 it was completely beyond her family’s means.

Thanks to the support of our donors and fundraisers Laya now has her ‘Dragony’ as she calls it and at last she is moving independently and whizzing around happily with her brother and sister.

Laya Zarah Small
Laya and her sister Zarah

Her mum told of all the other amazing changes to Laya's life thanks to the chair.

It lowers to the floor and rises right up to standing. As soon as she sat in it she reached down to touch the grass in the garden and can sit down at carpet level with the children in her class for reading and show and tell! She can reach the table and eat her meals with her family and school friends. Previously she had to take regular breaks from her old chair and be removed from lessons or activities to be lifted or hoisted to stretch her legs and be repositioned to relieve pressure sores but now she can just flick a switch herself and do all this,

This chair has a custom built seat, neck and head support – it supports her organs and limbs fully and keeps her airway open. Due to her improved posture and relieved pressure on her stomach and digestive system she is also now eating orally more regularly which is wonderful to see.

Laya's mum said: "Thank you to Action For Kids and all the people who helped fund Laya’s chair. I can’t tell you how much it has helped. She is so happy now. We use the word life-changing a lot but her Dragony has really changed my little girl’s life.

She loves school and can now be more involved and can play with her brother and sister. Her quality of life will be improved and she can be more independent. Action For Kids was the only charity that would consider raising funds for this chair and it will now last her for years as new and larger seating systems can be added to the chair frame and motor as Laya grows."

You can see the video Laya made for her appeal before she got her Dragony on the Action for Kids YouTube channel.

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