Orla’s story: “Being together, being happy and not being in hospital was one of the best gifts we could have been given.”
“Being together, being happy and not being in hospital was one of the best gifts we could have been given.”
From the 17th – 23rd of June, we’re proud to be supporting our charity partner, Together for Short Lives, in celebrating Children’s Hospice Week - a week dedicated to raising crucial funds for children’s hospices and bringing awareness to the extraordinary care they provide.
In communities across the UK, children’s hospices are places of joy, laughter, and magic. Places where every second, every minute and every hour, matter more than they do anywhere else. There are 54 of these special places across the UK.
Whether a family and their child need a short break, counselling, symptom management, end-of-life care or one of the many other essential services provided, a hospice can provide a safe haven. It is a place where they can make the most of the time they have together and make precious memories.
Since 2016, our partnership with Together for Short Lives has provided seriously ill children and their families with the opportunity to spend quality time together and create cherished memories, whether at their local children’s hospice or at home. This year, we have gifted 25 more breaks to families, enabling them to rest, recharge, and enjoy fun-filled moments at our villages.
In March, Orla and her family were gifted a break. They travelled to Center Parcs, Woburn Forest and shared their experience with us.
“Something we will remember forever”
When Orla was 10 months old, she was diagnosed with a brain tumour and her family’s world changed overnight. Now, nearly 13 years old, she has undergone several rounds of chemotherapy and operations and is a wheelchair user. As the tumour has developed, Orla has also suffered several haemorrhages and lives with significant learning and physical disabilities. Nobody knows what the future looks like for Orla.
“Last year, we received the news that Orla’s tumour had grown significantly again. She had two operations and suffered more complications as a result. Her recovery from the operation was long,” says Orla’s mum, Susan.
“To hear the news that we were being gifted a break at Center Parcs was amazing. The break came at the perfect time, and it allowed us to enjoy some peace away from the hospital. We could enjoy just being together.”
“Orla has a big personality. She loves knocking things over, like a domino rally or ten pin bowling. When we got to Center Parcs and realised we could go ten pin bowling, we knew she would love it. We had the best time.”
The family enjoyed lots of different activities during their break, from Aerial Tree Trekking and Interactive Squash, to watching the wildlife and cycling around the trails.
“Most families take a bike ride together for granted, but this is something we have never been able to do. At Center Parcs, Orla and I were able to cycle around together using a wheelchair bike, with Eddie and Simon on their own bikes. For the first time since Orla’s diagnosis, we could all cycle together! That is something we will remember forever.”
Since Orla’s diagnosis, Orla and her family have received vital support from their local children’s hospice, Keech Hospice.
“The palliative care team at Keech have supported us during some extremely difficult times. There have been times when we thought Orla would die, and they have been there through it all. They visit us at home, sometimes daily, and help with things like changing Orla’s medical equipment.”
The hospice’s support extends to the entire family, providing emotional and practical support.
“I’ve always found I could say more to Orla’s palliative nurse than I could to my family and friends. She understands, she doesn’t judge, and she would tell me how everything I was feeling was normal. Eddie has also received sibling support through a group that meets once a month. When things are very hard and Orla is having yet more surgery or treatment, the support that Eddie receives is so vital for his wellbeing.”
Since our partnership with Together for Short Lives began eight years ago, we have supported more than 130 families with seriously ill children, with a Center Parcs break. Together, we aim to help make every moment count for families across the country.
This Children’s Hospice Week, please join us in supporting Together for Short Lives. They support the 99,000 seriously ill children across the UK, helping families like Orla’s create special memories, and are there for the children’s hospices that provide vital care for these families every step of the way.
Donate to Together for Short Lives:
