Thirteen year old Steven lives in Nottinghamshire with his mum, Helen, and his older sister. He loves dancing, Helen told us “Steven goes to a local dance school where he does gymnastics, freestyle, rock and roll, street dance and breakdance. It keeps him busy and it’s been very good for him, he has had lots of chest infections in the past due to problems with his immune system, but all the dancing has helped with this. Steven has an undiagnosed genetic condition. He has multiple diagnoses, but no overarching diagnosis. It’s tough, because we don’t know what the future holds, he can remain stable for long periods of time and then his health takes a downturn, so we never know what the future holds. It can be really hard but we try not to look at the negatives.”

“This year, we applied to Family Fund for help towards break for us all, and booked a week in Cyprus. It was amazing! The hotel had a water park attached which the kids loved, and Steven loved getting involved in water volleyball, water polo and football.  He’s like a different boy on holiday, of course he still has to take his medication and do his physio, but getting away from it all allows him to be carefree and just be Steven. The atmosphere and the weather is so different, I see a complete change on him when we get away. Steven and his sister have a bit of sibling rivalry but it was so nice to see them have a good time together.”

The trip was not only a chance for Steven to enjoy himself, but it provided a much-needed relaxing break for Helen too. “Being a parent of undiagnosed child can be really tough at times, and it was lovely just to be able to relax and not have to worry about hospital appointments and all the stresses of everyday life. Even when I came home to a pile of letters from the hospital I felt re-energised and much more ready for it all.”