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Lily & Archie’s Story

This young family needed our support in keeping their two children with disabilities active. Here’s how we helped.

An ex serving family made contact with the Naval Children’s Charity, asking us for support for two of their four children.  Their two youngest children both have disabilities which can make things difficult for them.   

Lily, who is eight, has CTNNB1 syndrome. A rare and generally non-inherited genetic neurological disorder that presents itself in early infancy. It can lead to severe impairments in multiple elements of a child’s development, and can affect their ability to walk, talk, eat and engage with others. 

Her condition makes it difficult for Lily to speak, and she uses sign and gesture to communicate. She has developmental delay, learning difficulties, visual problems, and low muscle tone, which makes it difficult for her to exercise. 

Her older brother, Archie, 12, has Autism and ADHD. He can be aggressive and destructive and has few outlets that calm him.  One of the few things that soothes Archie is getting out bike rides with his Dad.  Sadly,  Lily was unable to join the rest of the family due to her condition. 

We funded the purchase of a Tomcat Disability trike for Lily, that allows her to go out and join the whole family on their bike rides. The whole family can now go out on bike rides together, including their older two children when they are home. Not only can Lily now spend more time with her family, but the exercise will help her develop muscle tone, and combat weight gain caused by her lack of mobility.

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How we can help you

The Naval Children’s Charity supports children up to and including the age of 25 whose parent(s) serve or have served in the Naval Service: Royal Navy, Royal Marines, QARNNS, WRNS, their Reserves and the RFA. If you need information or advice regarding support for your child(ren) please fill in the form to the best of your knowledge. One of our caseworkers will then contact you.

If you would prefer to call us we can be contacted on 023 9263 9534, our office hours are 0830-1600 Monday to Thursday and 0830-1300 on Friday.