CHAS has been a lifeline for family
Charity gives vital support in time of need
Discovering that your child has a life-limiting condition is a massive blow to any parent.
But when you’re only 21, the burden carries even more weight.
Young mum Tiffany Sullivan, now 24, will never forget the day she was told that her son Callum would need open heart surgery at just two days old.
She said: “When Callum was born we were told he had a problem with his heart and needed surgery. It was a very scary time.
“We have older daughters, Olivia and Sophie, who were two and four and were asking why we couldn’t bring their baby brother home.”
Callum was diagnosed with Digeorge Syndrome, has cerebral palsy, chronic lung disease, is oxygen dependent and needs a gastrostomy tube.
Since his first surgery, the Lanarkshire family have been in and out of hospital and last year, they were referred to Robin House. Tiffany said: “When I first heard about Robin House, my first thought was ‘my son doesn’t need it, he has loads of life yet’.
“But it’s been hard on us juggling Callum’s medications and trying to keep things normal for Olivia and Sophie so we thought we’d give it a try and we’ve never looked back.”
Tiffany and husband Steven have found Robin House to be an oasis of calm and the whole family looks forward to going.
Tiffany said: “It’s so great to spend time together as a family without any worries.
“At home, it’s just Callum, Callum, Callum and the girls don’t get any attention, but also don’t get to play or do nice things with their brother because they are at school all day and then his medication takes up so much time.
“At Robin House, the staff look after everything. A volunteer comes to pick us up, there are nurses to make sure Callum’s medication is correct, they arrange babysitters for the girls if we decide to go out for a meal and they even offer massages and other therapies for mums and dads to relax and take time for themselves.”
Having the extra support for Callum is a huge benefit but, for Tiffany, the trips are just as important for her daughters.
She added: “Olivia and Sophie just love going to Robin House. They are making friends with the siblings of other ill children and that’s nice to see.
“The girls count down the days before coming to Robin House. They are still sheltered from the serious aspects of Callum’s condition but they love spending time with him and getting to do things with him that they can’t do at home.
“Callum has been in the hydro-pool and even went bowling for the first time, which he loved. We’re making so many lovely memories.
“We’ve had so many fantastic opportunities thanks to CHAS and I’m so grateful for that. The support of CHAS has really helped us face this challenge. I don’t think we could have done it without them.”
The support of CHAS has really helped us face this challenge. I don’t think we could have done it without them