Emil the AFM fighter

Emil has a very rare condition Acute Flaccid Myelitis (AFM). He desperately needs your help to give him the best chance to make a recovery and walk.
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Emil the AFM fighter

Emil has a very rare condition Acute Flaccid Myelitis (AFM). He desperately needs your help to give him the best chance to make a recovery and walk.

Emil is happy 6 years old little boy from Bristol with big sense of humour. When Emil was born he was a delight and he battled against some early difficulties which included having his right leg in cast for a number of months (club foot) and multicystic dysplastic kidney.

All continued well for Emil until shortly after his first birthday. He suffered a respiratory infection on Saturday 20th October 2018. We rushed him to A&E as he had difficulties with breathing. Emil was kept in overnight and given oxygen and inhalator every hour to open his airways until he felt much better.

On Sunday 21st we went home and Emil was back to his usual self. On Monday 22nd I noticed spots on Emil’s mouth and hands but he was still happy and playful until the following Sunday when he lied down all day and didn’t want to eat. I noticed he had a mouth rash. In the night time he woke up with big cry and was very cold. Later on Monday he couldn’t keep his dummy in his mouth. His Dad and I took Emil to the GP who diagnosed hand, foot and mouth and prescribed antibiotics.

But we knew he was not right, his temperature was very low and so we called an Ambulance. The paramedics convinced us it was nothing to worry about and to wait 48 hours until the antibiotics started working. By Tuesday Emil was getting no better, so on Wednesday we attended A&E again but were sent home.

By Thursday he was getting worse and he was not able to move at all. We took him to the GP but we were sent away again. We did not give up and went straight to A&E and said it’s not normal as he isn’t moving , he can’t hold himself and it’s not a weakness.

An assessment was carried out by the Neurology team and an MRI scan and spinal tap was performed the following day. Emil had a general anaesthetic on 4pm on Friday. This was the longest two hours of my life. The doctors then gave us the unexpected news which broke my heart to million pieces. They found inflammation in his neck which causes paralysis and they diagnosed Acute Flaccid Myelitis (AFM) known as polio like disease which affects 1 in a million people, the one person in this statistic was baby Emil.

There have been very few cases in the UK with more in the USA. Not much is known about AFM in the UK. We have been told that there is no treatment and the prognosis is not great as children with AFM in the UK do not show any improvements. Emil was given IVIG to help his immune system fight the virus. He was tested for Enterovirus and it was D68 causing his illness.

We are completely devastated. We have tried to look everywhere for help. Researching online we found children with AFM in the USA. We felt hope because some of the children have received treatment and are getting back to normal.

What worried us the most was the doctors warned us he might stop breathing and swallowing himself at AFM affects muscles and nervous system. I watched his every breath and I watched the machines he was connected to. As the days passed he started getting better and no longer required the respiratory machine. Two days after IVIG treatment he started moving his fingers and within days he started getting stronger and stronger.

Emil spent 2 months in hospital in isolation and was discharged just after Christmas. He is under specialist care ay Stoke Mandeville hospital. Now we are going regularly for a week every 6 months.

We have tried all sort of intense rehabilitation places privately in the UK and Poland and have found one for Emil’s needs. The equipment and staff there are amazing .We are trying to travel there every few months as progress is incredible. Emil is full time wheelchair user and with their equipment he was able to make his first steps.

Thank you.


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