You can make a BIG difference. Read Allyson's story and learn how you can help families like hers get the support they need.
Allyson and her husband Stuart have two lovely children - Roy, who’s twelve, and Lucy who’s nine, both diagnosed with spinal muscular atrophy type 3. This is a rare neuromuscular condition which is degenerative, leading to a loss of movement and muscle wasting.
At the time of the diagnosis, Allyson and her family were the only people in the Aberdeenshire area known to have this condition, which made them feel very isolated and lonely - until they discovered Charlie House.
Mum supported by Charlie House
That first year of having the diagnosis, we thought surely they got it wrong? Where has this come from? We did genetic testing and discovered we were both carriers of the gene - but only 1 in 10,000 babies are born with this condition.
It was a very lonely time. We tried to reach out to find something or someone that could support us going forward - and one of Stuart's colleague's recommended looking at Charlie House as they supported families with disabilities in the local area.
Many thanks to Reach Video for crafting this beautiful short film.
"Charlie House supported the whole family - not just us, or Lucy or Roy. It was everybody. It meant I had people to speak to, it helped relieve some of Stuart's burden of being the main carer, and of course the kids could meet other people too. It lifted that weight and pressure.
It's not just about the adventures and the experiences you participate in, it's also about being able to be a person - being able to show emotion and allowing the children to express their emotions. It's hard for the children to cope with, knowing their condition."
"You want to ensure that the life they have, is the life you've given them - the experiences, the memories that you'll cherish. It's difficult knowing it's going to be a finite time. Having that support and love from Charlie House is fantastic - knowing you and that child will be supported all the way through.
"When Charlie House is built, it will be a home away from home. But it shouldn't take this long for us to have something like this in the local area for these children to get respite, care and support."
By donating a small amount, you can make a BIG difference to lives of children with life-limiting or life-threatening conditions, and their families, in North-east Scotland.
£10 could offer a child the gift of joy through a fun activity like music therapy
£30 could create lasting memories for siblings and grant them access to invaluable peer support
£50 could offer emotional support to a family member when they need it most
Discover the inspiring stories behind the families supported by our team and learn how you can make a BIG difference.
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Having a child who is completely reliant on your for all their daily needs and care can be hard. His daughter, Elena, has CHARGE syndrome. Read Scott's story today.
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Help us improve the quality of life for children in the North-east of Scotland who have life-limiting or life-threatening conditions
