After a fun-packed eight years with Julia’s House, master chef and DJ extraordinaire Oscar recently celebrated his 18th birthday and last hospice session with a special mocktail party in Rachel’s Retreat. Here, Oscar shares his experience of Julia’s House and as a teen with muscular dystrophy...
Hi, my name is Ozzy – I'm 18 years old and I live with my mum, my dad, my annoying younger brother Arthur, and my two cats, Izzy and Smudge.
I enjoy going for walks, cooking, listening to music, gaming, movies, board games, and swimming. I also volunteer at the local community radio station where I produce and record my own features on various topics, including JULIA’S HOUSE! I’m also part of a drama club where we devise our own performances. I like to be busy when I can!
I am a very sociable person, who likes to talk and have a laugh.
My condition is muscular dystrophy cmd1a. This means I can’t walk because my muscle cells have a missing protein. This also causes me to have scoliosis, which is a pain in the butt! I’m a full-time electric wheelchair user and I need help with everything because I have weakness all over. For example, I can’t lift heavy things, I have to use a belly tube (gastrostomy) because I can’t eat enough, and I have to use a ventilator because I have breathing difficulties due to my scoliosis and muscle weakness. I also have limited reach because of my contractures. But none of that stops me.
It does give me some sadness, because I can’t do things like other people. But I am happy most of the time. I try not to dwell on it.
I also have a mild learning disability that makes maths hard and some social situations with people my own age more difficult. I sometimes feel like I don't fit in.
I am more aware of my struggles now I’m older and I understand how my condition affects me and other people like me. It's been hard for me to come to terms with it all, but I feel at peace with it now.
There are lots of different types of muscular dystrophy and they are all different. My type doesn't get worse, but because my body has got bigger it's become harder, like my breathing and muscle tightness.
Some people think people like me might be stupid or not able to achieve things, but that is quite the opposite. We are just the same as everyone else; we have the same feelings and just want to be included and make friends.
I’ve been supported by Julia’s House for around eight years now and I’ve had quite a few Named Nurses over the years, including Genni, Jess, Carys, Molly and Jemma. They’ve all been amazing and so helpful and fun.
I also want to mention Helen Hunter, who has known me since I was three years old! Helen worked at my primary school before becoming a Carer at Julia's House. She was my first assistant in Reception Class and she has been with me ever since - how does she cope?! She is just as crazy as the day I met her. It was really nice starting at Julia's House with someone that I knew so well. Helen is amazing and I love her very much.
The nurses and carers have taken me out to lots of places: out for walks, visiting local places and wider family, taking me to clubs and music events. They have looked after me at home a lot, where we play boards games, do cookery, computer games and watch movies. They talk to me and support me.
Julia’s House would give my mum and dad a break when they looked after me. They also offer parent events, invitations to dinners and parties, days out, and Christmas activities. They have supported mum and dad when we have needed help and when we had some bad news and difficult times.
My brother uses the sibling service that Julia’s House provides too. He had a special lady who would come over for fun stuff and go on sleepovers and holidays with the other siblings, so that he could get away from me – I can be a bit a of a handful!
We all enjoyed the helpful relaxation massages, when the Julia’s House complementary therapist came to our house!
There have been so many great days out. One of the best days was going on a disabled access narrow boat for the day... I never thought I would be able to drive a boat! I have other favourites too, like going to see the Christmas lights at Longleat, racing car days, and the Julia’s House summer and Christmas parties are very fun.
I enjoy going to the hospice and spending time with other kids who are a bit like me. I like to help everyone at Julia’s House with all their technology problems as I am very good at it! There have been some music and cooking days at the hospice I have enjoyed. I also love hanging out in the gaming room, and scheming to steal the special Iron Man helmet from the movie (only joking... or am I?).
I also loved sleeping over one time and having time to myself without my mum and dad telling me when it was bedtime! That was a big achievement for me to stay away from home on my own.
Julia's House has helped me to get away from my parents! Sometimes we had teenager-orientated hospice sessions, and it was nice to be with other teens. When I was younger, I enjoyed housemates and story times etc, but when I got older I really appreciated the themed days like the cookery and music days. They have aways treated me with respect, especially with my personal care which can be tricky when you are older and I could talk to them about stuff if I needed to.
Julia's House made me a fake cocktail bar on my birthday, as I was 18. It was in Rachel's Retreat, a cabin in the garden. Inside were birthday decorations, loads of drinks and we made pretend cocktails. All the other kids and staff came in and we played some music and had a party. It was very fun and I will remember it forever!
I felt very sad about leaving Julia’s House and I will miss our sessions together, but I will always remember the fun times. I am now going to volunteer at Julia's House and give back to them for everything they have done for me. I hope to help promote the service, do public events and help new families.
Next year I hope to do a media course at college. I’m excited about this because I will be one of the first students with complex care needs to go over to the main college from my special needs unit. I want to progress with my radio and drama skills too.
Eventually, I am hoping to move out of my family home and have adventures of my own, but I will always support Julia’s House whenever I can.
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Julia's House has a CQC 'Outstanding' rating (Feb 2023), ranking us in the top quartile of all hospices in the UK. Click here to read the report.
