Mother’s Day is a time to celebrate mums who are simply amazing – and there are none more remarkable than mothers who care for a child with a life-limiting condition, and the grandmothers who, in turn, support them. Salliann and Hannah, a mother and a daughter from Ashtead, are just two of these incredible women, who are cared for by Shooting Star Chase.
Hannah’s first-born, Rory, has Menkes syndrome, a genetic condition which leaves him tube fed and catheterised, unable to walk and talk, and with weak muscles. When Rory was diagnosed with the condition as a baby, his family were told he may not live beyond three-years-old. Hannah’s mum, Salliann, describes the devastating moment they received the news:
“When Hannah and her husband, Phil, finally got the diagnosis and sat us down to explain, we were absolutely devastated. It was awful because you realise your grandchild is going to die and then you start thinking about how hard it’s going to be on everyone.
“The whole thing was unknown to us and totally out of our control, and that’s just terrifying. I think one of the hardest things of all was watching Hannah and Phil trying to cope with it; it was just heart-breaking.”
Now at four-years-old, Rory has surpassed the doctor’s prognosis, and Salliann has been hands-on with his care from the very beginning, learning to feed, suction and administer medications to support Hannah and Phil. Hannah explains what her mum’s support means to her:
“It’s hard to put into words how amazing my mum is. I don’t know how I’d cope. Rory needs specialist care and there are very few people in our lives who feel able to look after him, but my mum has learnt how to. She has Rory and his sister, Ivy, two and a half days a week so I can work, and she comes round every morning to help out. She really does go above and beyond – she’s one in a million.
“It’s exhausting looking after a child with a life-limiting condition. The lack of sleep impacts on everything, and there’s always a constant worry that something will happen and Rory will get worse. Between the support my mum gives us, and the short breaks and Hospice and Home from Shooting Star Chase, we’re able to live a relatively normal life, get some sleep and have a few hours to ourselves.”
Rory and his parents aren’t the only ones who benefit from Shooting Star Chase’s support, as Salliann attends Grandparents’ Days to learn more about caring for Rory, and uses time at our Guildford-based hospice, Christopher’s, to bond with her grandson, as she explains, “I’ve learnt about music and baby massage so I can soothe Rory, and I’ve been taught how to lift him properly, which is so helpful as he’s getting bigger. Rory and I have been in the hydrotherapy pool, we’ve seen the donkeys at Christmas and I used to take him to the preschool group, Little Chasers every week.”
Salliann says having adult children doesn’t mean you stop worrying, especially in their situation: “It’s awful because when your children are little you can make most things right, but you have that taken away from you when they’re adults. I struggle because as a mum I’m watching my child going through the most difficult times, and watching my seriously poorly grandchild, and I can’t make it go away. That’s why I help and do what I can.”
Hannah and Salliann’s family have always been close, and since Rory has come into their lives, Salliann says her relationship with her daughter is stronger than ever – and she couldn’t be more proud of her.
“Hannah and I take Rory and Ivy out for walks with our dog because Rory is at his happiest out in the fresh air, and it gives us time to have lovely chats together,” explains Salliann. “Hannah is amazing. Nobody dreams of their child having a disability, let alone a life-limiting condition. But the way she copes with her situation, how hard she works to make sure he has the best life possible, and her absolute love and devotion to Rory is wonderful. He couldn’t have a better mum.”
To support children, and their families, like Rory’s – please donate so we can continue our vital care.