A healthy active little boy was left unable to walk and facing a fight for the future after catching Covid. Mirko Ibrahim was developing like his peers when he became ill.
His mum Kawzr says she struggled to get answers for his health problems and ended up having to travel to Germany where medics pointed to the coronavirus. But six months after he developed "flu-like" symptoms and a temperature the tot is now unable to walk.
And far from enjoying the soft play which he used to go to with his family he now struggles to play and is often distressed. Back in the UK, Kawzr says she is still seeking answers and a continued battle for treatment to help her son who she says is a different child, reports Hull Live.
And she feels her son failed to get the care he needed when he fell ill last October. She says she had issued with the GP appointments and then Mirko was repeatedly sent home from hospital.
Kawzr said: "My son was a healthy active two-year-old who was walking and talking. He was such an easy child but everything changed over a few weeks. I felt I had lost him."
The 27-year-old told how she was unable to get a face-to-face appointment with her doctor to see Mirko due to Covid restrictions. Technical issues on a virtual appointment meant the doctor could not see Mirko and she had to describe his symptoms. He was then prescribed antibiotics.
A few days later, Mirko started shaking and worried Kawzr took him straight to Hull Royal Infirmary where he was kept in overnight, before being sent home and she was told to wait for a neurologist consultant appointment to come through the post. She said: "I told the hospital that this was not my son’s usual behaviour. He didn't normally walk or move like this. I knew deep down something wasn't right. I felt heartbroken and like nobody was listening to me."
A week later, Mirko's shaking got much worse and he developed a very high temperature. "I was so worried and called 999," said Kawzr.
"An ambulance came and we were taken to hospital. I just wanted my son to get better, but after a few hours we were sent home again. I felt so angry that nobody seemed to be doing anything."
Three days later she took Mirko back to hospital. "I knew something was wrong with him, this was not my Mirko," she said. "I told the hospital 'please help me my child is not normal, look at him, he is shaking’. I told them I wasn't leaving until I had been given answers but I was told his illness was not serious and that there were other children there who were more ill."
Kawzr claims she was told to leave the hospital due to the Covid policy and was not told if Mirko was tested for Covid-19. In response to queries from Hull Live, Hull Royal Infirmary has confirmed its policy in October 2021 “was to test all children admitted as inpatients”.
Just a few days later tragedy struck when Mirko stopped walking altogether. He was taken back to hospital where he stayed for four days and underwent numerous tests including an MRI scan and various bloods were taken. "We were sent home again and I still didn't know what was going on as his results came back clear, but my boy wasn't getting any better," she said.
"I just couldn’t stop crying. My boy was going downhill and it was breaking my heart. I hadn’t slept in weeks, it was horrible to see him suffer like this. My son became paralysed within weeks and nothing was done. I just kept getting sent back home and told to wait but in Mirko’s case time was not on our side. I had to leave my job as my son needed me."
Mirko's mum took him back to hospital a couple of days later when his shaking "became uncontrollable and he couldn't stop crying". A lumbar puncture was carried out, but this came back normal. The mum claims she was told Mirko would be transferred to Leeds hospital for further tests. This would be where Mirko would spend his 2nd birthday.
She said: "I had his second birthday all planned. Never did I think this would happen to him, I was so stressed but I know he needed me to be strong."
More tests were carried out at Leeds hospital, which all came back clear and Mirko was given a dose of vitamins. He was discharged after five days with a possible diagnosis of "post infectious cerebellar ataxia" - a condition which affects the function or structure of the brain. Kawzr claims doctors told her not to worry and that he would get better with some physiotherapy.
She said: "Although I trusted the doctors I still did not have a confirmed diagnosis. Some doctors told me it could even be epilepsy and the doctors in Hull had told me that nothing was guaranteed as they were still learning about what the condition was. I didn’t know what to believe anymore."
Mirko’s mum decided to take matters into her own hands and started researching all the symptoms her son had. She said: "No-one knows my son better than me, and no one feels my pain, I cried every night seeing him like this."
In November 2021 Mirko’s eye started rolling inwards causing his sight to become very week. His mum had by then found a private clinic specialising in paediatric neurology in Germany. She spoke to them and they were happy to see Mirko in Germany.
On January 19, this year, Mirko was seen by a specialist doctor in Germany where he was received another MRI scan and a metabolic test which came back normal. Further tests were carried out and it was confirmed by the clinic that Merklo had been a victim of Covid 19 and that he was suffering from postinfectious cerebellar ataxia which is typically seen in victims of serious head injuries, strokes or tumours, or after infections of the brain.
The German report, seen by Hull Live, says that it believes Mirko’s ataxia is the result of infection but, because of the time that has passed, cannot confirm whether it was the coronavirus infection or another, more common virus, known as EBV which they also believe Mirko had contracted.
His mum said: "In Germany they did an antibodies test and they had found out Mirko had Covid and to me it was clear this is all the outcome from Covid. They provided him with steroids as a treatment. That meant I would have to stay months in Germany and I couldn’t take my oldest child out of school so long and the doctors said it would be best to do the treatment in the UK. The doctor in Germany had written a report for me to take back to the UK with the recommended treatment and told me it is best to get it through the NHS.
"When I came back to the UK I immediately went back to the doctors and gave them all the reports. I was only given two days worth of the steroid treatment as they did not think it is even necessary to complete the full dose recommended by Germany.
"I saw progress through the two day treatment after two weeks he had slowly progresses and started crawling again and I am sure this is from the steroid treatment." Consultants have now said they will see Mirko in another six months time and have recommended regular physio sessions, which he attends.
His mum said: "I used to regularly take Mirko to soft play and to the park and he would just enjoy playing with his big sister and run around, now he needs two to three people help him move in the soft play area.
“I will not stop fighting for my little boy, I plan to go abroad again and take matters into my own hands I feel like I have no other option.”
A spokeswoman for Hull University Teaching Hospitals Trust said: “We are unable to discuss individual cases publicly because of patient confidentiality. However, we would encourage any patient or their representative with concerns about their hospital treatment to raise them with the team looking after them. Our Patient Advice and Liaison Service will also be happy to offer help and support to any patient - or their family if appropriate.”
Leeds Teaching Hospitals NHS Trust has been contacted for comment.
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