What is it really like growing up with a brother who has a complex medical condition? And how important is it to have support that’s just for you?
Born with congenital muscular dystrophy, Oscar was cared for by Julia’s House for around eight years. Now 18 years old, Oscar has become one of our Young Ambassadors.
In this special Q&A, Oscar turns interviewer and asks his younger brother Arthur about growing up together, the challenges and joys of sibling life, and how Julia’s House helped him find friendship, fun and support of his own.
Q. Describe me in three words...
A. Weird, loving and a normal guy.
Q. What's your favourite memory of us?
A. Playing Lego video games together when we were younger, especially Lego Marvel Super Heroes. We played it every day until we completed it and unlocked the most expensive character, and then you reset the data and we lost it all!!!
Q. What’s something I do that makes you laugh?
A. You make a lot of funny jokes. You have a very rude sense of humour!
Q. What was it really like growing up with me?
A. It was sometimes very worrying, as your bad health would appear out of nowhere. I've accepted that you have to come first, but it’s always been that way, so it doesn't really bother me.
It’s a positive thing that you are such a good communicator, so it just feels like having a normal brother most of the time. There are some brotherly activities we missed out on, like playing sports together and wrestling, but as I've never done it, I don't know any different.
I don't feel like your disability defines you and I'm just glad that we have been able to have so much fun together.
Q. What does Julia’s House mean to you?
A. The main thing for me is that they provided fun activities that I would not have been able to do otherwise. The sibling workers are really friendly and we became great friends; I really miss them.
We also had some really good family days, parties and special days out. I especially loved a barge trip we went on and the Christmas lights at Longleat – we probably wouldn't have done that sort of thing without Julia’s House.
Q. What did it mean to have Siblings support that was just for you?
A. It was nice to get a break away from everything. Tracey would always ask me how I was doing and it felt like she always cared about me.
Q. What are your favourite memories from the Siblings Service?
A. Hanging out with Tracey was my favourite thing. We often went to get yummy food and played football together.
The Braeside trips were always fun. It was great to meet other siblings, make new friends, relax and not have to worry about anything.
Q. If you think about the before and after, what difference did Julia’s House make in your life?
A. Luckily for me, I can’t remember a time when there was no Julia’s House!
Q. Are you still in touch with anyone you’ve met through Julia’s House?
A. Yes, I made good friends with one boy from Dorset. We catch up online now and again.
Q. What would you tell another sibling who was nervous about coming to Julia’s House for the first time?
A. Don't be nervous because there is nothing negative about it – it’s all good. It can only bring positive things to your life.
There are always good events going on to look forward to where you can spend time away from your family. There's never any pressure and if you want to go home you can.
