“Tackling everything with a smile” Alex’s Spina Bifida story  | News

Meet 11-year-old Alex who has had over 14 surgeries at Birmingham Children’s Hospital, regularly seeing our team of urologists and neurosurgeons.

Alex can often be seen chatting in the corridor, telling jokes or whizzing around in his bright red mobility aid with light-up wheels. He is also a theatre fanatic, gamer, budding artist and musician. He also has Spina Bifida.

Spina Bifida is a condition where the bones of the spinal cord don’t fuse properly during a baby’s development. This leaves the spinal cord exposed and can lead to varying degrees of spinal cord damage.

It can affect multiple organ systems to a varying degree including the brain (hydrocephalus), lower limbs (motor and sensory) as well as bowel and bladder function, and is often treated with spinal surgery 48 hours after birth to repair the defect, however, patients are often left with nerve damage that cannot be repaired.

Patients are looked after by a team of medical specialities that consists of neurosurgery, urology, orthopaedics and physiotherapy.

Alex, from Bourneville, said: “I am here a lot at the hospital, but I embrace having Spina Bifida. It is part of me. Although the hospital is like my second home, I still have lots of friends in my year seven class at school.

“The doctors and nurses are really nice. It is hard to choose a favourite because they are all great. They help with a lot of different things like physiotherapy and other activities to help my muscles grow.

“Sometimes it is tough having to ask for help or adjust to less accessible facilities because I am in a wheelchair. Some of my recent surgeries have really helped me adapt to day-to-day life a lot easier. Although this is the case, I do not let it hold me back. I have hobbies to take my mind off things like drawing. I have been to the theatre in Birmingham (The Alexandra) and the football Aston Villa) regularly in my wheelchair. I love going to the games. My dream is to get a high five from one of the players. It’s fun especially when we go as a big family outing. The theatre fascinates me. My favourite theatre show was Jurassic Park on stage.”

Alex’s Mum, Annie said: “Things like automatic doors and proper accessibility are important. There should also be more information available about Spina Bifida so that people understand what it is and how to help those affected.”

“Sometimes people see the wheelchair and think he’s less intelligent or less capable. They might show too much pity, which isn’t helpful. Alex is very capable and independent, and it’s important for people to recognise that.”

Alex said: “I think it’d be good for more people to understand the condition better, have more of an awareness of it and to speak more about it. They don’t really talk much about it at my school. I would feel more seen if they did.”

“I look forward to seeing what Alex will do when he is grown up, he loves science and drama. He is very knowledgeable and has a great sense of humour,- a natural comedian.”