“I’m looking forward to helping other families and really hope they will feel supported… I wish I had had this help available when Kayden was diagnosed.”
Valerie Trayner from Edinburgh, tells the story of her 13-year-old son Kayden, who has CLN3 Batten disease, and talks of how she is training to be a peer befriender as part of the new BDFA Batten Befrienders programme.
Before Kayden was diagnosed a friend said to me, “Stick with your gut – keep fighting to get a diagnosis.” I’m so pleased she did as I was at that stage where I was wondering if I was making it all up and felt my husband and I were the only ones who were seeing the changes in Kayden. Every day I was having to speak to the teacher about his behaviour and I knew he wasn’t a bad boy – this just wasn’t him. He needed to have all our attention and wanted adults’ attention in particular. Kayden would put his hand up in class but forget what he wanted to say or ask something completely different to what the teacher had just been talking about. I really didn’t think it was ADD but I didn’t know what was going on. My husband and I asked each other, “Why is Kayden not looking at us, why is he looking over us?”
The hardest part was going back and forth to the doctors, teachers and opticians and none of them could give me any answers. I had to try and put the pieces together myself at home. Once we heard from the Eye Pavilion (a specialist eye treatment centre) that Kayden couldn’t see out of his right eye the first piece of the puzzle was put into place. Now we were put on some sort of track and we were referred onto the next professional which helped so much as we didn’t have to keep constantly fighting everyone to find out more.
For me, my worst case scenario was that Kayden was going to go blind. When they started talking about genetics I couldn’t understand how someone starts just losing their vision when the rest of the family were ok.
Following the Batten diagnosis there were suddenly a lot more professionals involved and then we had to fight to get suitable housing that could be adapted to Kayden’s needs. Six weeks later we decided to go to the BDFA conference and it was here that we heard about genetic testing for family members and siblings. At this point Kayden’s younger brother Kodie, who was three at the time, hadn’t been tested. Kayden was six-years-old when he first showed symptoms so it was a huge relief a few months later when we found out that Kodie was Battens-free.
A new world
Vision and behaviour were the initial problems as they were deteriorating so fast. Thankfully Kayden’s mobility was still good and he was still scrambling all over the climbing frame which frightened me with his lack of vision – but Kayden wasn’t worried! A professional from the Guide Dogs Association came and gave us advice about how to adapt to the lack of vision – he showed us how to know when to cross the roads by touching the spinning button underneath the lights at the crossings.
We found that places aren’t disability friendly and the world we knew before diagnosis was not the same as the world we are in now. We had to let Kayden lead us and let us know how to adapt to this new world. We had to constantly be one step ahead.
Batten disease is a horrible disease, it’s hard and the unknown is so challenging. It has changed me as a person. I understand things a lot more and it has been eye-opening. Before diagnosis I always said I never wanted to be a carer and it is hard being given a carer role that I never applied for, to have to navigate the system and to have to fight for so much.
It is very hard when you feel you’ve finally got to grips with one area and you have a plan for how you’re going to deal with it all and then the next challenge arrives. There is constant change and learning. Sometimes I question myself and ask, “Do I even know what I’m dealing with? Do I really understand this?” It’s hard explaining to people what Batten disease is. You actually have to go to the dark places to emphasise to friends and family the extent and seriousness of the disease and all the losses that occur at each stage. You wouldn’t see all this just by looking at Kayden. Just the other day a friend told me she didn’t even realise Kayden is blind! Kayden now uses a wheelchair but can walk around if he’s assisted.
We are now six years into our Battens journey and life is good – we manage and we’re at a more settled stage. We take things day-by-day or even hour-by-hour some days. Life is still fun, Kayden is still the Kayden we know. He’s still a joy, he’s still full of fun and humour. The other day we were on the bus and a stranger said to Kayden, “You’re a superstar – you’re a superhero!” Even strangers can really tell how special he is. All the staff at school love him.
I’m currently training to be a parent Peer Befriender for the BDFA and am really enjoying the course. It is really important to me to do this training and have something ‘just for me’ that I can work towards and that works around caring for Kayden and looking after my other children. It’s also a great place to build relationships with other parents and can be so informative about Batten disease too.
I’m looking forward to being able to help other families and really hope they will feel supported by the Peer Befriending programme. I hope that families using the service will find relief in off-loading to someone who does understand something of what they’re going through. I wish I had had this help available when Kayden was diagnosed.