Rochdale family’s hopes for 2025 after ‘the worst time possible’ as rare disease leaves their son completely paralysed and struggling to breath.

On 19^th March 2024, Ayuub Al-Asad (15) from Rochdale started to experience a sharp pain in his stomach. Less than 24 hours later, he was on a ventilator, sedated, and paralysed from the neck down with no idea what caused it.  Despite a traumatic year for him and his family when his extremely rare condition went undiagnosed putting his life at risk, Ayuub is feeling positive about the year ahead:

“I am looking forward to going to Stoke Mandeville where I will get will get specialised care and plan to get back to school to finish my GCSES and choose a college to join in September 2025.”

Back in March Ayuub’s day was seemingly like any other until he started experiencing a sharp pain in his stomach. As his symptoms progressed, he started feeling pins and needles in his legs and they began to feel heavy and numb. Eventually, he could not move his legs at all, falling to the living room floor. His mother Hena recalled their time waiting for treatment in A&E:

“He’s crying out in pain and he’s like, ‘My arms are burning. My arms feel like they’re on fire. They’re burning. It’s burning’.”

By 8am the following morning, Ayuub was on oxygen and arrangements were made for him to travel to Royal Manchester Children’s Hospital, where he was sedated and ventilated in the Intensive Care Unit for three months and where he was diagnosed with acute flaccid myelitis, a condition that affects the spinal cord. He was left paralysed from the neck down, his bladder and bowel stopped working and his diaphragm was paralysed on the left side, leading to a collapsed left lung.

In May, Ayuub had a tracheostomy to help him breathe while his diaphragm was not working. He remained ventilated for five months before it was taken out in October.

Hena said, “It was just the worst time possible, just to see him go through that. The things we’ve gone through, it’s been traumatic. It’s been devastating because his world has changed. Everything has changed for him, still to this point. He’ll say to me, ‘mum, all I want to do is walk. I just want my legs to move and I want to walk’.”

After months of struggling to understand the condition and seemingly a lack of specialist knowledge, Hena was handed a leaflet for Spinal Injuries Association, a charity that supports people with spinal cord injuries.

Carol Adcock, SCI specialist nurse lead for the charity, came to the hospital to support the family and provided staff with an individualised plan of care for Ayuub, his condition drastically improved, his blood pressure remained stable, and he stopped falling ill.

Hena said, “She was like a breath of fresh air, it was amazing. She came and she changed everything and it was brilliant. I felt like I could breathe after all these months. If there’s anything I’m struggling with, all I have to do is just ring Carol and she will help me.”

Once Ayuub had been weaned from the ventilator and no longer needed a ventilator dependent bed, he went to the National Spinal Centre for Children and Young People in Stoke Mandeville, where he had physiotherapy sessions, occupational therapy sessions, and was taught how to sit up independently, how to self-propel in a wheelchair, how to dress himself, and how to manage his personal care.

Hena said, “He said to me that everyone understood what he was going through there. He looked around and he didn’t feel different, he didn’t feel off. He felt like he belonged there.”

Ayuub had since returned to Royal Manchester Children’s Hospital as the family home has not yet been made accessible. He will return to Stoke Mandeville in February for a longer admission and will likely return home from there if the house is complete.

Specialist SCI nurse Carol said: “I visited Ayuub recently and it is amazing to see how far he has come. He is a lovely, cheerful and resilient young man and should be proud of the progress he has made. I am visiting his school to educate staff there on some of the issues of his spinal cord injury that they may need to be aware of in the hope that he can soon refer to school.”

Mum Hena said:  “As a family we hope to get back home and start life again as a family together. We have missed being together since it all happened. We also hope to raise awareness about this devastating condition for other families to be aware of the signs and symptoms and how to get the support and help needed from Spinal Injuries Association and other charities.”

Ayuub during his treatment at Royal Manchester Children’s Hospital.

During his rehabilitation Ayuub has been busy but is still unable to return home until it is fully adapted.