Dylan’s story
Dylan lives with TBR1 related disorder, a condition which means he will need support for the rest of his life. His mum, Jemma, talks about the challenges and worries of having a child with a rare condition but also the joys it can bring.
Dylan has a very rare genetic disorder called TBR1 related disorder. There are currently around 160 people worldwide diagnosed with this condition. This gene affects the development of the brain in many ways and due to the change in this gene Dylan’s life, as well as ours, has turned out very different to what we expected.
Dylan has autism, ADHD, speech delay, profound learning disability, hyper mobility, possible seizures, behavioural issues and really struggles with emotional regulation. All of these things are incredibly difficult to manage at times, not just for us but for Dylan too. We are also very blessed by Dylan, he feels things 100%, there’s nothing like walking through the door and being greeted by a little boy who is just hysterically happy to see you, even if you’ve only been gone 5 minutes.
His love is HUGE, powerful and unwavering. He is empathetic, caring, kind and sensitive. Not at all like the outdated picture of autism would have you believe. He has taught us so many things about how important it is not to judge others and to embrace people’s differences. It’s easy to make a judgement about what you see on the surface but I see people with kinder eyes now. You just don’t know what people are really dealing with.
The hardest part of the journey we are on is still the fight for services. The social and healthcare systems in this country are absolutely ruined. There aren’t enough things in place to support families like ours. I have to fight for every single element of support and we have nowhere near enough support to help us thrive as a family. It’s so shocking to be in this position and realising that the services just aren’t all there, ready for you when you need them.
This fight has made me unwell, and continues to do so. Every evening after the hard day is over I am overwhelmed with pain, worry, and have constant questions about the future. Who will take care of my baby when I am gone?
I will parent Dylan for the rest of my life which is hard, but I will do so as long as there is air in my lungs. But I know that eventually, I will need to face the fact that Dylan will be in the care of a system that is utterly broken. It breaks my heart, every single day.
I want to raise awareness of the circumstances that many families like mine are going through, and would like everyone to consider, especially after a general election, what they can do to support the community.