"Devoted parents Emma and Shane, and daughters Sophia and Zara – are a lovely family from Downpatrick, who have faced many challenges since Sophia was born with Cornelia de Lange Syndrome (CdLS), a rare genetic disorder that affects many parts of the body. Emma reveals how Hospice’s support has helped her family for the past decade.
We’ve spent a lot of time in and out of hospital over the past 11 years since Sophia was born, but her first year was probably one of the toughest, as we were trying to understand the syndrome, how to help her and how to navigate life with a newborn baby who also happened to have CdLS.
“Sophia was diagnosed within 48 hours of being born. With that diagnosis of CdLS came a wide range of complex medical needs and physical and learning disabilities, such as seizures, hearing and eyesight problems, and issues with communication and digestion.
“Our disability social worker first mentioned the Children’s Hospice when Sophia was 3 months old and I was horrified. I thought she was telling me that my daughter was dying. She tried to explain to me that that’s not what the Hospice meant, but I wouldn’t listen. I had no interest in visiting the Hospice.
“The social worker recognised that we just weren’t ready, so she left it for another 6 months before mentioning it again. But still I told her I wasn’t interested in going somewhere that ‘signified death’, somewhere full of sadness and grief. She explained to me that the Hospice was much more than palliative care and asked us to just visit it once before deciding for sure. We still weren’t convinced and although we said we’d maybe visit some time, we didn’t ever really have any intention of doing so.
“A few months later we received a call from the Hospice inviting us up for a day visit to look around. The lady was so nice on the phone that I just didn’t have the heart to tell her we weren’t interested. So a few days later off we went, feeling frightened of what we would face.
“When we arrived, it was completely different to what we had imagined! We were greeted with the friendliest smiles from staff and other visitors, the walls were painted bright colours and had children’s artwork. There were all sorts of toys and play equipment. There was music and laughs coming from the music room and there were personal touches of children’s names on each bedroom door.
“The staff explained to us what fun things they like to do with the children and other parents spoke to us about how much of a lifeline the Hospice was. We agreed there and then that actually we would like to have an overnight visit to experience it properly.
“Our first overnight visit was close to Christmas, and it was the most amazing, magical experience. We stayed in the family accommodation while Sophia stayed with the staff. There was a travelling panto show put on in the living room, Christmas trees and lights everywhere, fun games and lots of arts and crafts. We were hooked.
“We have now been visiting Hospice for about 10 years and although Sophia has had a few stays by herself, for us personally we like to stay in the family accommodation too. Not because we don’t trust the staff, but because we feel like it’s a mini holiday for us all and we don’t want to miss out on the fun.
Our eight-year-old daughter Zara has been going with us since she was two months old and it’s her favourite place. She ALWAYS asks when our next stay is and she is very disappointed if for whatever reason we aren’t using family accommodation for that stay.
“Horizon House is the most amazing place to make family memories, have fun and relax, knowing Sophia is being well cared for but still being close enough to her that we don’t miss her.
“I cannot highlight enough how incredible the Hospice is. It’s our safe haven.”
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