12-year-old Ruby has got various symptoms which have developed over many years. She has lots of diagnoses, but no defined condition, which means her symptoms are difficult to manage. She has a paralysis of the stomach, Gastroperisis, meaning she can’t empty food in the normal way. She also has bowel dismobility in the large bowel which means it doesn’t process food as it should, and as a result she has an ileostomy bag to collect waste. She has hypoglycaemia which means she needs to be fed very regularly – up to 22 hours a day. She has hypermobility which causes her lots of pain and means she gets fatigued very quickly. She gets chronic pain in her gut, back and joints requiring various medications throughout the day, every day.
“When Ruby was born everything seemed OK but within a couple of weeks my maternal instinct was telling me something wasn’t as it should be,” says mum Nicki. “She was in so much pain when she tried to eat I was sure something wasn’t quite right.”
Ruby has had to endure many operations through the years and needs specialist round-the-clock care. And the family are still not completely clear about the underlying cause.
“Her 12 year-old existence doesn’t bear a great deal of resemblance to that of another 12 year old,” says Nicki. “She can’t go on play dates, sleepovers, or school trips unless I go with her. Even down to her clothes – we have to be aware they’ll need to be adapted to cater for the tubes going into her stomach.
“As a parent it’s your worst nightmare, watching your child suffer, being in agony not being able to take the pain away for them, and having to constantly tell her it’s going to be alright when you know it’s not alright and you know the next day she’s going to go through the exact same thing again. It’s soul destroying. When you have children you don’t plan for this. You wouldn’t wish that on anyone. It’s like a bad dream you don’t wake up from.”
“It’s so difficult for us to see her going through the pain,” says dad Vic. “That’s the worst thing, because you just want to take that pain away. But Ruby’s amazing, she always gets on with whatever problems she has. She rarely complains, she’s very spirited and always keeps us on toes. There’s no words that can describe how proud we are of Ruby.”
Ruby and her family have been supported by Shooting Star Chase children’s hospice for six years, providing short breaks at Christopher’s in Guildford, Hospice at Home, and a number of therapeutic activities.
“We were feeling exhausted and drained and our family support worker said she knew this wonderful place she could refer us to,” says Nicki. “When she said ‘hospice’ we were ‘no, no’. We had preconceived ideas and didn’t want to entertain that idea one bit. Reluctantly we went along and realised how wrong we had been.”
Nicki says Shooting Star Chase gives Ruby the opportunity to forget about her symptoms. “Ruby feels secure there because she can be Ruby without having to hide the tubes. No
one’s looking at her; no one’s making any assumptions about her. She walks into Christopher’s smiling, relaxed, and confident there’s people there who understand her. She always has an amazing time there. She has therapy sessions, arts and crafts, has her nails painted, plays outside, she bakes. And she loves the staff. What she gets from Shooting Star Chase is priceless. She comes homes happy and completely fulfilled. Shooting Star Chase is a happy vibrant place full of love – that’s what you notice when you go through the door – that feeling of love and security.”
Vic says the support from Shooting Star Chase is also vital for parents. “There’s been a few times when we’ve picked up the phone and called Shooting Star Chase and said ‘Help. Please help.’ And they’ve always said ‘yes, what can we do and how can we do it?’”
“The support from Shooting Star Chase is a complete lifeline for us too,” adds Nicki. “It’s the only help and support we get as a couple. We have Hospice at Home which means we have a carer come to the house and do activities with Ruby, and we have the chance to go out and relax knowing Ruby Is safe. It gives us balance in a life that is usually so difficult. As a parent of a child like Ruby with multiple symptoms to manage, you can’t begin to explain what it means to be able to hand her over to someone and know they are safe. Without Shooting Star Chase our lives would be so much worse.
“For me, as well as being mum, I’ve very much ended up in the role of her carer too. I go to school with her. I think I’m her best friend too. I’m all those things but not really Nicki very much anymore these days. There’s little pieces going here there and everywhere. There’s not much of me left anymore. I really don’t think I would have coped personally without the support of Shooting Star Chase.”
Shooting Star Chase has also enabled Ruby and the family to enjoy special treats to make every moment count. “We’ve been to tea at Selfridges with Dame Joan Collins, and tea at The Dorchester’” says Nicki. “And going to X Factor was so special,” adds Vic. “When we came out Ruby said it was the best day she’s ever had; basically the best day of her life. We try to look at the positives so when Ruby is undergoing treatment or when she’s in pain or feeling really down we’ll say ‘do you remember when this happened and do you remember when that happened?’ Those happy memories are so valuable and it’s Shooting Star Chase who has given us all of those memories.”