Shooting Star Children’s Hospices have been part of Zoë, and her parents, Britt and Adrian’s lives since she was just eight weeks old. With her daughter now 14, Britt tells how Shooting Star Children’s Hospices has been the place her family can turn to.
Zoë’s birth was extremely traumatic. She died for six minutes in hospital before being resuscitated and having to have a tracheostomy fitted to help her breathe. Zoë has a genetic bone dysplasia disorder called OS-CS and used to require a tracheostomy to aid her breathing. She was later diagnosed with a rare complex neurovascular disorder, which causes chronic headaches and mini strokes.
The family were discharged from hospital shortly before Christmas but weren’t granted any support from their local council, meaning it was solely Britt and Adrian left to look after their baby girl with all her complex needs. “I was slowly and surely sinking under, hardly sleeping and simply terrified something would happen to her. I went to some very dark places.”
During this traumatic time, Cathy and Debbie, nurses from Shooting Star Children’s Hospices came to look after Zoë for a few hours at home. “I’d been having regular panic attacks, and when I walked into the living room, I just collapsed, and they took one look at me and arranged it so we could all come into the hospice to stay for emergency respite. They rescued us.
“I’m in no way exaggerating when I say they literally saved my life. My GP was so close to sectioning me, but she spoke to the team at Shooting Star Children’s Hospices who said they could help us. We lived at the hospice for three months whilst I recovered and they campaigned for a care package for us so we could go home. They built my confidence to care for Zoë as well as be her mum.
“I was in survival mode, she’s going to live, I’m going to live and that was it. Then, I remember vividly, one day, during our stay I looked at Zoë and had this unbelievable rush of primeval love, like a tidal wave – and know it wouldn’t have happened had it not been for Shooting Star Children’s Hospices. They took us in, supported us, gave me tea, counselling, and time to recover and heal and realise I can do this. I was broken and they helped me put myself back together again.”
Shooting Star Children’s Hospices have continued to be a support to the family as Zoë’s grown up. “When Zoë’s day care closed, she was able to go to Sparkle Day Care for one day a week at the hospice, and she’d be able to stay for a weekend – we called them her spa breaks because she loved it so! Not only did we know she was loving it, but it gave us a chance to recharge and have a break.”
In 2014, the family were in the process of having building work done at home. During this time Zoë’s neurovascular condition was getting worse, requiring surgery. “Everyone at the hospice always listens when we need support, so when I was taking Zoë to the hospice for music therapy, they asked if I was ok and when I explained how concerned I was with all the dust at home with her tracheostomy, it was arranged for Zoë to go straight to the hospice after her neurosurgery to recuperate for three weeks whilst the building work was completed.
“It’s not just the care services but also the experiences the charity have given us, I’ve gone on a day’s cookery course, we’ve meet X Factor Celebrities through the charity appeal, seen Rick Astley live, the Christmas parties, the summer parties – all the fun stuff.
“Last year I took part in the Snowdon Sunrise Trek and climbed a mountain! I always wanted to do something for Shooting Star Children’s Hospices so climbing a mountain in the middle of the night seemed like a proper challenge to me – especially as I used to be terrified of heights! I came back buzzing, one of those life-affirming experiences and something I would never of had the chance to do without them.
“There is so much support for your child and the whole family – all the services offered are like the scaffolding, literally holding up your life so you can keep going, knowing you have that safety net is just crucial. Then there are services like complementary therapy, which are like the extra sprinkle of glitter. In that moment it’s just for you, you can have a massage and it just makes you feel fabulous and enlightened again.
“I don’t think people can ever truly understand how hard it can be having a child with such complex conditions, but everyone at Shooting Star Children’s Hospices does because they live it with us; the terrifying scary times, when she’s really poorly or if she’s having low self-esteem, who do I turn to? I turn to Shooting Star Children’s Hospices.”
This article is from our Summer 2022 edition of Shine. Read more from the digital version here. If you’d like to receive our printed Shine magazine, which comes out twice a year, these are sent to everyone who has made a donation within the last 12 months, and opted in to receiving post.