Rochdale teen left paralysed by rare disease

On 19 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.

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.

The family rang for an ambulance, which arrived within 15 minutes, and he was taken to Oldham A&E along with his mother, Hena Khatun. After a four hour wait, Ayuub was given a blood test. While they waited for the results, he developed neck and shoulder pain, a severe headache, his temperature had risen, and he was repeatedly sick. Hena recalled the waiting time: “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, 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 PICU 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.

While Ayuub eventually regained some movement and sensation in his arms, his legs, bowel, and bladder still remain paralysed. 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.

For three months, Ayuub kept getting UTIs and his blood pressure was dangerously high.

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, Hena was handed a leaflet for Spinal Injuries Association.

Carol Adcock, SCI specialist nurse lead for the charity, came to the hospital to support the family. She immediately identified that Ayuub is at risk of autonomic dysreflexia, a syndrome in which there is a sudden onset of excessively high blood pressure in people with spinal cord injuries. She also established that he was given the wrong type of catheter, which led to the repeated UTIs, and that he needed a regular bowel routine. After Carol 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.

The hospital has since turned to Ayuub for advice on how to treat similar patients in the future as part of their Patient Experience initiative. Hena said, “His voice really does matter. His voice is everything now. He had a zoom meeting with the head of physio, head of OT, head of the hospital, the youth centre and he spoke about his experience and what needs improving at the hospital, what they could do better, and he voices all that now. It’s really nice to see him involved in stuff like that because his voice really matters because he’s felt like every time he says something, no one listens to him, and now he feels like, yeah, I actually have a voice.”

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.”