Desperate plea to help extend their son’s life

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A couple face a desperate race against time to raise money to pay for vital treatment, to extend the life of their beloved baby boy. Little Theo Urbaniak, from Hill Top, Nuneaton, suffers from GM1 ganglosidosis infant type, which is a rare and terminal illness.

Sadly there is no cure, but there are treatments available that could extend the one-year-old’s life – but they come at a huge price. His parents Tomasz Urbaniak and his partner Ewelina Balon simply cannot afford the £5,000 a month price of a clinical trial the University of Minnesota in USA, so they are appealing to the community around to help save their son.

The medicine being used in the trial, called Zavesca, is not available on the NHS but could help slow down GM1, which progressively destroys nerve cells in the brain and spinal cord, and many children with the condition do not survive early childhood.

“We just want to do all we can for him,” said Mr Urbaniak. “We want to start Zavesca as soon as possible, but it is such a lot of money. It doesn’t seem fair that you can go and get a prescription for £8, yet this is thousands of pounds.”

“We won’t know how long Zavesca will extend his life for, but we want this for him. We would like to raise enough money for six months of Zavesca so that we can start the treatment and give us enough time to raise enough money for another six months. Children in America who have had Zavesca have lived until they were five or six. We have a race against time to start Theo on the treatment.”

Other treatments to slow down GM1 could be on the horizon – but the couple, who have two other sons, know time is not on their side.

“There are other treatments planned in 2018 but we don’t have time, he may not live that long,” Mr Urbaniak said.

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