Janka has been diagnosed with ADEM in April 2016 when she was nine months old. ADEM is an acute disseminated encephalomyelitis, a rare autoimmune disease characterised by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibres.
Janka had seizures following a mild cold and ended up in ICU, not responsive for several days until she was diagnosed through MRI and lumbar puncture. She was put on medication and recovered fully within few weeks.
She had another episode a year later, in April 2017 at 21 months. She had similar symptoms and after her diagnosis was confirmed through MRI and lumbar puncture again, she was put on the same medication and she recovered fully again within few weeks.
She had her third episode on 20 June 2019, at nearly 4 years of age, again following a cold. This time, she stopped breathing and had to be airlifted to the hospital. She was in induced coma for a week and taken off life support on 27 June, a week later, when she started breathing independently. She had MRI and lumbar puncture and started the same treatment again.
She was kept sedated because the inflammation on her brain was present longer than during her previous episodes and she continued to have seizures. The usual treatment was not working. She received plasmapheresis and consequently regained consciousness.
She was moved from ICU to a Children neurology department in a hospital in Slovakia where she lives and after three months in the hospital, she was sent home. Unfortunately it has been confirmed that some neurons in her brain have been permanently damaged. The full extent of the damage is not known yet and she continues to make slow but steady progress.
Although, she still cannot sit independently or use a toilet, she can now move her arms and legs, say a few words and she can see now. She still receives most nutrients through tube going directly into her stomach but is slowly learning to eat, make more movements and talk.
She now needs to receive speech and physical therapy. Depending on her progress, she may also require long term assistance. Janka’s Mum is currently at home with a three month old baby that was born two days after Janka’s last episode and her seven year old sister. The family needs help with the cost of therapy and if you can assist in any way, it would be greatly appreciated. Thank you for your kindness.
- Dominika Hudakova
- Ján Čižmár
- Zuzana Klembarová
- Diane Janisko
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