Naomi's Story

“Whilst I’m writing this with a big mug of coffee, I am exhausted after the most fantastic weekend at Jacksplace. They had arranged a Saturday night full of pure entertainment including some great laughs at a comedy club followed by a visit to the casino. Even though I haven’t been going to Jacksplace long, I already feel part of the family and I’ve made some great friends.

“I visited Jacksplace for the first time in January 2016 and instantly felt comfortable and welcomed by everyone, I remember the other young adults staying there at that time were all gathered in the main dining area playing a pretty serious game of bingo!

PIC: Naomi & Abi enjoying a day at the races!

“I am 20 years old and live in the middle of nowhere in the gorgeous Dorset countryside. I have Spinal Muscular Atrophy type-2 (which affects the muscles) I was diagnosed at the age of 5, and have been in a wheelchair for 10 years. It’s a condition that will get progressively worse over the years; I don’t allow this to get to me too much. In fact I don’t think about it very much, I focus on the things I can do rather than the things I can’t. No point in being negative about something you can’t change. I also have scoliosis (curvature of the spine), which I had operated on in 2010 to straighten the spine with metal rods.
 
“I’ve done some amazing things; including flying a small plane and competing at national level playing Boccia (Paralympic sport). Along with these achievements I am a massive fan of live concerts and comedy gigs, and also travelling… America is the dream!  After leaving school, I went to college for a year to study art and design; I’m passionate about anything crafty, especially photography. Ever since leaving college I’ve been looking for a job, or voluntary work, but this is easier said than done due to my disability. 

“My mum is my main carer, I need help with personal care but once sat in my electric chair I’m pretty independent as long as things are within reach. 

“It was nerve-racking changing to Jacksplace after having spent so many years at Charlton Farm, which is a hospice I used to visit on the outskirts of Bristol. The age limit of this hospice is 21, as it’s a children’s hospice. My family and I used Charlton Farm as a place of respite, somewhere for my parents to have a break from caring for me. I was referred there when I was about 11 years old.  One day at Charlton Farm I was talking to a new member of staff who used to work at Naomi House & Jacksplace; they told me to look into it… and the rest as they say, is history. 

“There was one thing I was most apprehensive about though, and that was having complete strangers at the time, deal with my personal care. It sounds stupid, it’s their job, but it’s the one thing I struggled with before I became comfortable and got to know the wonderful people around me. Once over that barrier, I soon came out of myself and now I can’t wait to go back every time!

“It’s such a good feeling when I talk to others I meet at Jacks who have similar conditions to me, as we chat about things that no one else understands and have a little rant about our situation. This is one of the best things I find about Jacks, that each time I meet new people in a similar situation to mine, so we always have at least one thing in common.
Whenever I talk to people about Jacksplace being a hospice for young adults, they don’t expect me to say I go out clubbing and going to the casino with people I’ve met there… they’re surprised, to say the least! It’s almost like people think we can’t go out and have fun like everyone else our age just because of a wheelchair. And that’s what I love most about Jacksplace; the fact that they have given me the chance to do things I wouldn’t normally do and meet others I wouldn’t normally have the chance of meeting. 

“Jacksplace is everything I thought it would be, and more. My parents say it’s absolutely fantastic how they organize so many activities for us to do, and how everything is so well organised. They think it’s important that I’ve got the chance to experience these activities with others at Jacksplace, as it gives me the chance to be more independent. 

“I am very excited and intrigued to see what they have planned for the future, I’m sure we’ll have more fun times to come!”