Dance fundraiser to help toddler left paralysed by rare disease
- Credit: Archant
The family of a boy who was left paralysed due to a rare disease are hoping to raise £20,000 to take him to America for specialist treatment.
Emil Jazurek was diagnosed with acute flaccid myelitis (AFM) – which affects the spinal cord and nervous system – leaving him paralysed from the neck down.
Due to the rare nature of the condition, doctors told his parents Tomasz Jazurek and Agnieszka Roguska he might never recover.
Agnieszka said: “It was very scary. The doctors warned us he might stop breathing and swallowing himself because AFM affects the muscles and nervous system, so we were constantly checking his monitor to make sure he was breathing.
“He was completely paralysed from the neck down and the doctors told us he might never regain any movement.
“They couldn’t tell us if he would recover because it’s so rare.”
Emil, who is 16-months old, stunned doctors and nurses when he began moving his fingers two days after his diagnosis.
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He spent two months in hospital undergoing daily rehabilitation and he can now move most of his limbs and sit up.
Emil still needs constant care and Agnieszka has given up her job as a housekeeping manager at DoubleTree by Hilton, Cadbury House, in Congresbury to look after him.
She said: “He has therapy every day. The days when he’s not at the hospital, we take him for private physiotherapy.
“It’s a lot of work and it will take two years of rehabilitation to get him back on his feet.
“We don’t really know what’s going to happen, because some people don’t get any movement back, but we are really hoping he’s going to get better.”
His parents want to raise £20,000 to take him to the Kennedy Krieger Institute in America which specialises in treating children with AFM.
Agnieszka said: “Emil is such a determined little boy. 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.”
Friends of the family are holding a zumbathon to raise money for Emil on February 16 in Bournville Primary School from 1-2.30pm.