*** 30th March UPDATE ***
THANK YOU, THANK YOU, THANK YOU.
Aaron's family and all of us here at Cash for Kids are overwhelmed with the support you've given us since we launched this appeal just two weeks ago.
Today we can order Aaron's bed BUT Aaron's family don't want to stop there. Aaron is just one of many children in the Highlands and Moray who desperately require a specialist bed.
We had applications for 5 specialist beds in our last grant round ranging in cost from £4000 to £14,000. Unfortunately we didn't have enough money to fund them all - one of those applications is for siblings who require beds that cost £5698 each.
Aaron's family want to continue fundraising so they can help more families in our community.
Thank you again for all your support.
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Aaron is an incredible 9-year-old boy from Inverness. He loves the outdoors, especially trips to the park, and brings so much light and determination into our lives every single day.
Aaron has an extremely rare genetic condition called Temple-Baraitser syndrome. When he was diagnosed in 2017, he was just the 16th person in the world to receive this diagnosis, and he is currently the only child in Scotland living with it.
His condition comes with complex medical challenges. Aaron has drug-resistant epilepsy, is pre-verbal, and has severe global developmental delay. He also lives with hypotonia, dystonia, hypermobility, sleep difficulties, and severe scoliosis (curvature of the spine). He even has no nails on his thumbs or big toes, one of the many rare features of his condition.
Later this year, Aaron will undergo major spinal surgery to correct his scoliosis. This surgery is life-changing. Iit is also high-risk for any person, but with Aaron's needs it makes it much more dangerous and will require an extremely careful recovery.
Aaron has no sense of danger. He loves to explore, climb, and move. He regularly climbs over his bed guards, knocks over furniture, and gets out of bed during the night. After spinal surgery, this could be incredibly dangerous. If his spinal rods were to dislodge, it could cause serious complications and pain.
The hardest part is that Aaron won’t understand why he needs to stay still. He won’t understand why certain movements could hurt him.
That’s why we are fundraising for a specialist Hannah Cot Bed.The Hannah Cot Bed would give Aaron a safe, secure space to recover and sleep.
It has:
• Soft, high protective sides to prevent climbing and falls
• Viewing panels so we can monitor him closely, especially during seizures
• A profiling function to safely change and dress him while protecting his spine
• The ability to lower close to the floor to support his rehabilitation
This bed would not only protect Aaron during recovery, it would transform our daily lives. It would allow him to heal safely, reduce physical strain on caregivers, and give our family something we haven’t had in a long time: peace of mind at night.
Thank you for your support.