Emil the AFM fighter

Emil’s Story:

Emil is 18 months old and has a very rare condition Acute Flaccid Myelitis (AFM).
https://www.cdc.gov/acute-flaccid-myelitis/index.html
He desperately needs your help to give him the best chance to make a recovery. 

Emil is a much longed for much loved little baby. I suffered from polycystic ovarian syndrome, with a lot of hard work I lost weight and was very happy to become pregnant with him. It wasn’t an easy pregnancy but 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 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 within days he started getting stronger and stronger.

Emil spend 2 month in hospital in isolation and was discharged just after Christmas . In hospital he was getting physiotherapy every day . Now when he is outpatient he is getting just 2 days a week which one of them is hydrotherapy . We are doing everything to get him best physiotherapy possible so we are going regular to Brikdale Neurophysio Clinic , doing 2 times a week private paediatric physio and EFS every day . We bought loads of equipment home so we can do some exercises at home . In March we went to our first Physiotherapy rehabilitation to Polanika in Poland for 2 weeks . It was amazing experience so we are going there for 4 weeks in June. In April we stayed 4 week in Stoke Mandeville hospital where Emil was using wheelchair . He was doing great and it really helps his shoulders . Unfortunately we are not able get one on NHS because of his age (under 3 ) so it’s additional cost of £2000 Children like Emil needs lots of hours physiotherapy to help brain communicate with week limbs so they will remember movements . We ware lucky to get his 12 weeks hydrotherapy from NHS which started on 29th April ,

2 weeks in Polanika is £1200
https://www.polanika.pl/

Private physio therapy at home is £40 per 45min

Brikdale clinic in London

https://neuro-physio.co.uk/ which treats children with AFM and the cost is £95 per hour.

The costs of these treatments is beyond what we, Emil’s parents,  can afford, especially due to the fact I have had to give up work. Emil is such a determined little boy. He is now 16 months old and has battled this illness since October 2018.  He has achieved so much by himself but he needs that extra treatment to give him the best chance to be able to make a fuller recovery.
https://m.facebook.com/emiltheafmfighter/

Donations (0)

  • Dominika Mamet 
    • £50 
    • 4 mos
  • Jill Jones 
    • £10 
    • 6 mos
  • Gregory Rokus 
    • £50 
    • 6 mos
  • Myriam Gozalo eizaguirre 
    • £25 
    • 7 mos
  • Anonymous 
    • £25 
    • 7 mos

Fundraising team: Tomasz Jazurek (2) 

Agnieszka Roguska 
Organizer
Raised £2,016 from 74 donations
Bristol, South West England, United Kingdom
Tomasz Jazurek 
Team member
Raised £897 from 30 donations
This team raised £745 from 30 other donations.
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