My name is Dylan Reains, I’m 18, and I’m a student and DJ. I also happen to live with Spina Bifida and Hydrocephalus – conditions that I’ve been dealing with since I was born.
It’s been a pretty wild ride with lots of ups and downs, but I’ve learned how to keep going with a smile and some serious determination. Since this is Spina Bifida Awareness Month, I thought I’d share my journey with you all – it might help someone out there realise that no matter what, you can still chase your dreams!
My experience
When I was born, I needed surgery straight away to fix a hole in my back and to put a shunt in my brain to help manage the fluid build-up. But things didn’t go exactly as planned; the shunt perforated my bladder, so I had to go through subsequent surgeries.
Honestly, I’ve had over 103 surgeries on my bladder, bowel, shunt, and legs. Yep, you read that right, 103! But even with all that, I’ve stayed focused on making the most of life.
Managing my bladder and bowel was a pretty big challenge growing up. My bladder has been reconstructed twice using tissue from my appendix and bowel. At first, I needed help to empty my bladder, which took forever and, let’s be honest, wasn’t exactly fun when I was at school.
My bowel issues were sorted by creating a stoma, which is basically a way to divert waste from your body into a stoma pouch. These procedures have made a massive difference to how I feel every day and have made things way more manageable.
Because of all the surgeries and infections, I had to miss a lot of school. In 2011, I was off for six months straight because of my perforated bladder! It was really tough trying to keep up with lessons and stay in touch with friends. But I didn’t give up – I pushed through and managed to finish my GCSEs in 2019. Staying active by going to the gym and working on my strength helped me stay positive, even when things got difficult.
When I turned 18, I had to switch from children’s to adult healthcare services. It wasn’t easy. I now have to travel to loads of different hospitals and doctors, explaining my whole medical history over and over again. It gets pretty tiring, but I know it’s necessary to keep me in good health. So, I just power through!
How music changed my life
During the pandemic, I got inspired by DJs who were livestreaming and decided to give it a go myself. I signed up for a music production course with Cloth Cat, a charity in Leeds that helps people like me get creative with music. It’s been a total game changer for me – music is my way of escaping everything, and it lets me express myself.
Right now, I’m turning my shed into a proper DJ booth so I can take my DJing to the next level. I might be in a wheelchair, but that’s not stopping me from chasing my dream!
So, what’s next for me? I want to DJ in clubs, bars, and maybe even in other countries!
I really hope that by sharing my story, I can inspire other people to go after their dreams, no matter what life throws at them.
Finding the right products to manage my bladder and bowel independently has given me the freedom to live life on my terms. Now, I’m ready to take on whatever comes next and keep proving that anything’s possible.
Thanks for reading, and here’s to spreading more awareness about Spina Bifida and Hydrocephalus this month!
Stay positive and never stop believing in yourself – you’ve got this!