The Ataxia UK staff interviewed Yvette Loach and Vanessa Bartlett, the mother and Aunty of James Loach. James, a loving young man who passed away 10 years ago at the age of 19, has left a lasting legacy that his family is striving to uphold.
During the past decade, the Loach family has supported Ataxia UK and its community. They raised over 6K in 2022, but more importantly, they have been actively raising awareness about the condition. Yvette and her daughter Amy Loach organised a very special evening held last September with help from Vanessa and their niece Victoria McGookin in memory of James, in which over six thousand pounds was raised – it was a wonderful way to honour James’s life. Vanessa and Yvette also play a key role in running the Rainham and Gravesend Support Group and are doing their upmost to support the group members in every way possible.
- Through the years, you’ve done many interviews about James. We feel like we really got to know James through your memories of him. Through your words, we could really feel that James was a lovely person and a wonderful son and brother. If you had to describe James in one word, what would it be and why?
Yvette: There are lots of words to describe James, inspirational, wonderful, caring, loyal but ultimately loving is the word I would choose above all else. He was incredibly loving.
Vanessa: I would definitely say very loving and caring. It’s a shame it’s just a word but loving embraces it all. He cared about his friends. He was there to listen to them. A lot of them have come forward to say how much he’s helped them over the years. They used to reach out to him for advice. We didn’t know that to be honest with you. We quite babied him because he was Yvette’s youngest child and only son for a start.
We quite babied him in the family, but we didn’t realize just how strong he was as a person outside, until his friends came forward afterwards and said, “oh you know we used to ask James about this that and the other.” So, I’d say loving actually, because he was loving enough to let us baby him, but caring enough with his friends and family.
- In these interviews, you mention James’ big dreams, his passion for construction, his related decision to study at the University of Reading to become a quantity surveyor, and his love for football. He also had a great social life and many friends. James lived life to its fullest. Can you share your favourite memory of him?
Yvette: Of course, I have so many different memories. When he was born and being the first boy in the family. We were just so over the moon. James was a good little footballer and one of my favourite memories of him was at a football match funnily enough. He was about nine years old, and the opposing team had just scored a goal, a fantastic goal from just under the halfway line. Not long after that, James scored an absolutely brilliant goal from the halfway line and I remember everybody singing ‘anything you can do, we can do better’. It was a magic moment because it was unexpected. I just thought “oh wow, that’s my boy!”
To be perfectly honest, James wanted his peers to do well. After he died his tutor from his college wanted to bring out an award for most improved student in James’s memory because of the help he had given them. I didn’t know any of this, he didn’t mention it. This all came out afterwards. He didn’t brag, he was very protective of his friends and always wanted to encourage them to do well.
When his funeral took place, our uncle noticed someone who was just outside the church and he asked if the boy was going inside. He told my uncle he just wanted to pay his respects as James had helped him come off drugs.
Another thing that came to light was when James was out with friends. At the end of the evening being quite late his friends had gone their separate ways but one of the girls needed to catch a train home. James took her to the station and stayed with her to ensure she was safe. He didn’t just leave, he made sure she got on the train safe and sound. That’s the sort of thing that makes me so proud of him.
Vanessa: Although he always had swag, he loved looking and smelling great and I remember that t-shirt. Whenever I used to get him those Ben Sherman t-shirts, he would say to Yvette “oh if you can’t afford it, Auntie Nessie would get one”. He loved nice things, but I wouldn’t call him someone that pushed himself forward. I reckon he would have done incredibly well, but he wasn’t a pusher. He wasn’t overconfident so that you could think “oh he’s gonna do well and he’s going to shove himself forward” he would have done just fine, but in a very mellow way. He probably would have met someone lovely had a family, and actually done very very well and worked hard but not bragged about it. He was absolutely striving to do the best he could…. He wasn’t a drinker. He never had loads of beer. In fact, he didn’t really even like the taste of many drinks. He was that sort of clean, living, young man.
James’ friends still see Yvette regularly. I mean it’s 10 years on now, they’ve grown into men and they could easily cut the cord. They came to the event and they were very very supportive.
- This past September you organised a 10-year memorial to honour James’ legacy. You have put so much effort into organising this memorial and have raised a wonderful amount. How did the planning go? Did the outcome meet your expectations?
Yvette: There was an awful lot of planning. Rebecca Holt was amazing. She was our go-to person if we needed any advice. Amy and Vanessa were also amazing. It took nearly a year to coordinate. Amy did so much behind the scenes and Vicky designed and printed the tickets and program of events too. The whole experience was emotional, it was the build up to it plus the reason for doing it. I think that’s what basically takes it out of you more than anything, the reason behind the event.
Vanessa: I think we were really great all together and then afterwards knackered…We had a perfect mix because it was very much an Ataxia UK event. Don’t forget we had people there buying tickets, yes they knew of him but some didn’t know him personally, I mean some were from our own Ataxia UK group. We had 21 guests from our Ataxia group or their friends and family attend the event. The James theme ran all the way across, which was wonderful, we had photos on the table of James etc.
- In the ten years since James’ passing, you have done so much to raise awareness and build James’ legacy. How does it feel to make a difference, while celebrating James’ life, and do you have any projects for the future?
Yvette: It’s always bittersweet for me because on the one hand you’re helping other people, which of course, is our aim and we want to keep this going as long as we can but it’s heart-breaking because of the reason why we’re doing it. I mean without any disrespect; I’d rather have never even heard of ataxia. It’s there because James had it and I think it’s one of the most horrendous diseases you could actually get. I know all diseases are horrendous, but ataxia is not taking your mind but it’s taking your body bit by bit. My hope is that they’re going to find a cure. I’m going to be so over the moon for anybody that it can help.
I will look into doing a fundraiser, but it probably won’t be as big as the 10 year memorial event. Things will happen for sure, and maybe we can do something unusual.
Vanessa: You’ve got to remember this is very much our family and friends chosen charity so even little things like Christmas cards, we go to care cards. In our family, Ataxia UK is our underlying charity at all times. I think Ataxia UK is amazing. I bang on about it a lot. It’s a tiny charity doing so much good. Even at Christmas we always give an amount to the Big Give campaign.
One thing I can say I love about Ataxia UK is that you are so personable, and that is a beautiful way to run a charity. It’s so incredible and you don’t get that from every charity.
- You are a valued friend of Ataxia UK, and we are grateful for all your support over the years. You have done an incredible job running the Rainham and Gravesend support group! As someone that’s been so involved within the ataxia community and have met many people affected by the condition, we would like to know your thoughts on what you believe has changed in diagnosis and ataxia awareness in the last decade?
Yvette: I feel that I know so much more about the charity. Whether it’s because we’re doing as much as we can for Ataxia UK, it feels like the word is getting out there. People seem to know more about ataxia but that could just be because we’re so involved. Also, I’m well informed about the things that are going on behind the scenes, such as conferences. Though I feel that there’s an awful lot going on, it’s a really difficult one because I think with it being to do with the brain, obviously it’s such a hard thing to find a cure for. Yet there is a part of me that believes it will happen eventually.
Vanessa: I think that locally, obviously around us loads more people know about it but I think with any unusual illness you hear about it and you dismiss it. The good thing I suppose the word ataxia is getting known and is being used in everyday conversations. Someone said their cat had a form of ataxia because ataxia means you’re not coordinating, lack of coordination. Therefore, the word ataxia can at least be used for many different things. But generally, if we’re really honest, I think it’s the sort of illness that unless it affects you, you won’t really think about it. You won’t even get to know it. But it is getting out there.
I think I admire Ataxia UK because for such a tiny charity, it’s very professional, quite an incredible team.
- Is there a message you would like to share with our readers?
Yvette: I was looking for motivation for anyone suffering with Friedreich’s and other ataxias and I found this and thought it was so apt: It’s not the strength of the body that counts, but the strength of the spirit.
Vanessa: Because of Ataxia UK, you’re not alone. People shouldn’t feel alone because they shouldn’t feel that they’re going through a journey where no one’s going to understand it. I think that’s why Ataxia UK is excellent. Through Ataxia UK we created a support group. I said all along, I wanted to do it because if James had wanted to have found a support group, I wanted there to be one.
- Contribute to James’ legacy by giving and making a difference to those affected by Friedreich’s ataxia.
- Living with a rare condition can feel isolating, and Ataxia UK aims to reduce that feeling by coordinating a network of groups across the UK, where people affected by ataxia can meet up, socialise, share experiences and advice, or just have a good time. Why not join one of our support groups?!
