Ebony's Story
Ebony loves to visit Jacksplace where she enjoys socialising with friends and activities like cooking and baking, safe in the knowledge that she will receive the specialist nursing care that she needs. This is her story.
Ebony has a rare progressive neurological disorder called Ataxia-telangiectasia, which affects her nervous and immune systems. She loves to regularly visit Jacksplace to see her friends, relax and have fun, while she receives the specialist nursing care she needs.
This is her story.
I am 26 years old, and I live at home in Bournemouth with my mum, dad and my dog Trixie. I love coming to Jacksplace to hang out with my friends, and the carers are friendly as well.
I volunteer in a charity shop, sing in a choir and love going to the cinema with my friends. I’ve got a Nintendo Switch that I like but can’t use it for very long as I get cramp and find it very tiring. I’ve got an iPad that comes in handy for reading because I can enlarge the font.
I have a rare progressive neurological disorder, Ataxia-telangiectasia, which affects my nervous and immune systems. It means that my motor skills are affected as well as my eyesight and my speech and I am also very susceptible to colds and infections.
My health condition means I have to use a wheelchair for a large part of each day because I can’t weight bear and I get tired very easily. I have dystonia which is a disorder that causes me to have involuntary spasms which affect my mobility. My eyesight is impaired, so although I can see, if I’m looking at one line on a page, my eyes jump to the next which makes it difficult for me to read.
I need help with everything, and my condition will deteriorate over time. It frustrates me a lot because I can’t do what other people can do.
I see my friends go off and do things on their own, but I can’t go out by myself as I always need to have a parent or a carer with me. I’ve got a carer who comes into my home to help on a couple of days a week, but my mum does all of my personal care.
I was first diagnosed when I was three years old after my parents had noticed that I was gripping the floor with my toes when I tried to walk, and I kept walking in zig zags. I also kept getting lots of colds. My parents took me to the doctor, but it took a while for me to get a diagnosis.
I started visiting Jacksplace when I was around the age of 18 and when I first visited, I thought it looked amazing and so cool.
I like Jacksplace because they don’t treat you like kids and they don’t treat you like you’ve got a disability. They treat you like one of their own.
I love swimming, so if I can, I will go in the hydrotherapy pool, which is great for me as I can actually walk in the water. I have diabetes so the exercise is good for me. I can’t really go in public pools as they don’t always have the right facilities such as the special overhead hoists that they have above the hydrotherapy pool in Jacksplace. They also have them in the bedrooms and bathrooms. I like it when I have a bath there, as I’ve only got a shower at my home, and I love having a bath.
I love going to Jacksplace to meet up with friends and we can relax together and have some fun.
However, I’ve struggled with the passing of two of my friends who also visited Jacksplace, and I found it very difficult as one of them had the same condition that I have.
At Jacksplace, we do activities like cooking and baking. I particularly like cooking dinners and even cooked a roast for everyone once. There’s a café area that’s styled like an American diner, and the worktop and tables can move up and down which makes it easier for me to reach. It is difficult for me to do this at home as things aren’t at the right height for me.
Because I am diabetic, I have to have insulin. When I stay at Jacksplace, the staff do my insulin for me. I trust the care staff to do that.
I have to avoid dairy and carbohydrates as they upset my stomach, but the catering team will plan for this when I am visiting. I like it that they ask me what I want to eat as I don’t always like the food that’s on the menu so I ask if I can change it! They don’t mind doing that for me.
When I stay at Jacksplace we go to the pub and cinema, and they arrange lots of different activities. One of our trips was to Oceanarium in Bournemouth for the day, which was great fun. They have arranged for a mobile farm to come to Naomi House & Jacksplace, which is great because I love animals. I go to day service at Jacksplace which is held once a fortnight and people can visit just for the day. We do lots of arts and crafts and play board games and card games.
The activities team arrange a special weekend each year where we can stay at Jacksplace and have activities arranged around a particular theme. On one of the weekends, we made a film all about Jacksplace, called Jacksplace TV. We all worked together, and we interviewed the staff. I have amazing memories of that day.
I like it when they arrange special themed events like the New Year’s Eve parties, masquerade ball, and a James Bond themed night. Each year, they arrange a special Jacksplace festival that is called Jestival. There’s lots of music and live bands which I really enjoy.
Jacksplace is a home from home.
It gives me independence and it gives my parents a break from me, and I get a break from them! Everyone needs a break and a change of scenery sometimes.
Naomi House & Jacksplace is a great charity because they help so many children and young adults like me and we need the support.
Jacksplace TV
Check out the film that Ebony mentions in her story and discover Jacksplace from the perception of the young adults that visit, in this film, created by them.