We have the opportunity to take part in the 2023 Royal Parks Half Marathon and we would love you to join Team Sandcastle for this...
There are more than 6,000 genetic conditions. Each one affects less than 0.1% of the population but together they are one of the greatest causes of disability and early death, affecting three million families in the UK. (source: National Human Genome Research Institute)
Many are life-limiting, all are life-changing.
The Sandcastle Trust walks alongside families living with a rare genetic condition to help build lasting positive family memories, strengthen family relationships, improve emotional wellbeing and resilience.
Become part of Team Sandcastle and raise money to help us support families affected by rare genetic conditions.
We have the opportunity to take part in the 2023 Royal Parks Half Marathon and we would love you to join Team Sandcastle for this...
“Our family’s experience is where the idea of The Sandcastle Trust came from. We hope to help other families like ours who are affected by rare genetic conditions create positive family memories”
Danielle Singleton
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"Louie taught me so much during his life and how to truly love and care for someone. I will miss him every day for the rest of my life."
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"Tabby does not really play with toys, she needs 1:1 supervision and does not play independently. She hates being cooped up indoors and loves to be outside whatever the weather. She has found this winter lockdown particularly hard."
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“It was really easy to apply to the Sandcastle Trust and they were so lovely to deal with. The whole process removed any stress – which is brilliant when you are looking after a profoundly disabled child.”
Ilmarie Braun, Eddie's Mum
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“It was the most memorable couple of days. It was time away when could we feel like a “normal” family - we could forget the medical side of our lives and the constant fighting for Maddison.
“We felt so grateful the children could experience London and have fun.”
Lidia Sherwood, Maddison's Mum
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“We were fortunate enough to be offered complimentary tickets on a Polar Express train ride for us all via the charity. We had a wonderful evening….Rare genetic conditions can be extremely difficult to deal with as are all disabilities, but having the cherished moments to look forward to and refer back to is a wonderful gift. Such a simple idea, but so powerful!”
John & Julie Davidson
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“Vinnie enjoyed the day out so much,” Kelly recalls. “It was lovely to make memories as a family. Vinnie loves to go out for the day. He enjoys theme parks, fairgrounds, the zoo and woods. He is a real outdoors kid. On the whole he is a happy little boy.”
Kelly Harrison, Vinnie's Mum
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“When we approached the Sandcastle Trust we knew our three boys might not have long together. The organisers said they would be able to arrange an autumn half term break but when we explained Reuben might not live that long, they pulled out all the stops to sort a holiday cottage in August, 2021. I will always be grateful for that.”
Sophie Byrne, Reuben's Mummy
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