Oscar has a cheeky personality, a huge smile and a love for everything Harry Potter. Oscar was born with quadriplegia cerebral palsy, a four-limb movement disorder. More recently in 2021 Oscar’s gut started to fail. He also had a burnout from dystonia, another movement disorder Oscar lives with, which affected his brainstem and cannot recover from this.  

In 2019 as Oscar’s condition declined and his needs began to change, he was referred to Little Havens.    

At Little Havens there is everything Oscar loves around him; the respite can be a fun time for Oscar on his good days or it can be a restful stay with round-the-clock care. The break is also a valuable time for the whole family giving them “a chance to reset.”  

Adelaide, said, “It’s much more to us than respite, they help to get the best out of each day for Oscar. If he’s having a good day and really smiley and happy, they go outside because they know that’s something he loves and is important to him. They want to make Oscar happy, and that’s what Little Havens does for us as a family; nothing is impossible.”  

After being referred to the hospice, the family began to receive care in their own home from our Little Havens Community Team. Oscar is cared for at home by Heather, a carer for Little Havens, and Melissa, a senior nurse at the hospice. He has a special bond with both of them. Adelaide continues “Heather is one of Oscar’s favourite people, he beams when he hears she is visiting.”   

“The Community Team has given us opportunities to go out when we wouldn’t feel comfortable leaving Oscar with anyone else.

“Because of the Little Havens Community Team, Rob and I were able to go out to a comedy night and dinner, which was really special because we hadn’t been out together for a few years. The team comes with a ‘can do’ attitude and they can always make it happen, and they were like ‘Go out and enjoy yourselves.’ We felt like a couple for the evening again, which you quite often don’t when you’re going through this kind of experience with your child.”

There’s no recovery for a brainstem injury and one day this will affect Oscar’s ability to breathe. So, the family “run with the good moments” as it’s their chance to make precious memories together. A memory the family will always treasure was a winter beach trip in December made possible by Little Havens, just a couple of weeks after Oscar had stayed at the hospice as he became more unwell and his family were told that he may die.

“When we told Little Havens we wanted to go to the beach one more time with Oscar, it was a can-do attitude to make it happen. It wasn’t a problem that we weren’t at home; we had some extra respite with them so Heather could look after Oscar during the day at the beach – they were amazing – meaning we could make memories together and forget about the past month.”  

Adelaide continues, “The first thing that comes to mind when I think of life without Little Havens is loneliness. I think our world would be very isolated and we wouldn’t have the opportunities to hold on to a little bit of hope. With Little Havens we are surrounded by people who understand what you’re going through and love our children as much as we do. It would be a very, very lonely time without them.”  

To find out more about how you or someone you know would benefit from the care at Little Havens, click here.

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Published in 2023