Layla-Grace (18-months-old) is a happy, bubbly, determined, and chatty little girl who loves music and playing outside. She lives with her mum Jess in Derbyshire.

Layla-Grace was diagnosed with Achondroplasia – which is a rare condition that causes shortened limbs brought on by a genetic mutation during Jess’ pregnancy. The diagnosis process was very traumatic for Jess, who had to undergo additional scans and testing. At 32-34 weeks Jess was even asked if she wanted to terminate the pregnancy, which she was passionately against. She says “Obviously, I said no way, it doesn’t matter what her condition is, she’s still my baby”.

Laya-Grace’s condition means that her arms and legs won’t grow as long as those of a child of a similar age, however, Jess says her determined personality means she finds ways to adapt and different ways of being able to do those things, like putting aids in place to support her. However, she does get frustrated quite easily when she can’t do things that she sees other children her age at nursery doing.

The biggest challenge for Jess has been the lack of awareness around Achondroplasia and difficulty accessing information and support. Jess says, “There hasn’t been a massive amount of awareness around the condition. It was quite difficult to get information about it and find other people that are in a similar situation”. It’s been a huge learning curve, especially as a first-time mum going at it alone. However, she has found an invaluable support network through charities and online.

One thing that has made a big positive impact is receiving a specialised car seat for Layla-Grace from Variety, the Children’s Charity. Layla-Grace needs her spine supported when travelling and their previous car seat could have caused more damage and harm if they continued to use it. This new supportive seat means Layla-Grace can travel safely and comfortably without pain or breathing challenges her condition can cause. Jess says it has been “a lifesaver.” Where Layla-Grace used to be very uncomfortable (often having a tantrum), in her old car seat, the specialised car seat means Jess and Layla-Grace are able to go out and do things together in a safe, comfortable and supportive way. Jess says, “Layla-Grace is so much more comfortable. It’s been an absolute lifeline”.