Ten-year-old Ruby lives in Staffordshire with her parents and two little sisters. She wished for a family holiday in Devon that caters to her unique needs, giving her precious quality time surrounded by her favourite people and things.
When Ruby was four months old, doctors discovered a hole in her heart. The surgery resulted in a five-week hospital stay and another diagnosis – she's one of just 1,000 around the world with Kleefstra syndrome, a rare genetic disorder affecting her development and movement. The condition covers a broad spectrum, and she is one of the most severely affected cases. She has no speech and limited mobility but Mum, Debbie, says:
“She makes it easy on us. She’s full of life, and the happiest child. Ruby loves chickens, swimming and adores spending time with her Daddy. She is funny without knowing it. Sometimes she just does stuff at really appropriate moments. She is happy to just be loved and that’s all we ever want for her. She’s the light of my life, my best friend and my sidekick.”
At one year old, Ruby developed epilepsy – her seizures have gradually increased, and she can have several a day now. It was a scary and overwhelming time but, through everything, Ruby’s parents always felt hopeful. She was in and out of hospital until she was five, and mum Debbie felt afraid to leave the safety net of medical experts.
Things worsened in 2018. Ruby was hospitalised following a chest infection and her heart stopped for four long minutes. Thankfully, she recovered and, afterwards, Ruby’s play specialist suggested Make-A-Wish.
The emotional stress of Ruby’s illness is tough on the whole family, so the opportunity to focus on something special just for Ruby came as a welcome surprise.
“Ruby can’t tell us her One True Wish, but we know what makes her the happiest,” Debbie says. “When we take the children out, finding places where Ruby can make the most of the surroundings is hard. We chose a family holiday in Devon for her wish. It’s in a valley surrounded by rolling hills, close to beaches so we can take the children on lovely walks, and she can swim in the heated pool every day and there’s ponies, chickens and other animals, and a play barn too.
“We’ve stayed here in Devon before, so we know it’ll be good for Ruby, but for Make-A-Wish to take care of everything makes it so much more special. It makes us so excited that we haven’t had to worry, to spend time that we just don’t have going back and forth with bookings and arrangements. For so many families, this would just be a normal trip, but for us it’s special. Our children go through so much, and they deserve this time.
“Even just getting a loaf of bread is a mammoth task for our family,” explains Debbie. “Ruby’s dad, Jason, and I spend a lot of time apart to enable us to care for the children. We are always on the go – gastrostomy feeds every four hours, lifting her and changing her. It can be a big emotional and physical struggle. We worry all the time about losing her. When her heart stopped last year, it was the single most horrific thing ever. We just want to keep her safe and keep her with us.”
Thanks to your overwhelming support, Ruby’s wish has now been granted. We will update everyone who supported her once she is back from her wish.