A MUM has told how her life was turned upside down after doctors revealed her two kids are unlikely to live past the age of ten.
Courtney Webber, from Staffordshire, was devastated when medics diagnosed her sons Oscar and Theo with Pelizaeus-Merzbacher Disease, a rare life-limiting brain condition.
The mum-of-two said she knew something was wrong when she noticed tremors in her son Oscar’s eyes and head after he was born.
Oscar, now three, underwent tests which revealed he had Pelizaeus-Merzbacher Disease.
Mrs Webber, 24, was pregnant with her second child at the time, and in a further blow, testing showed her unborn son Theo also had the condition, reports StaffordshireLive.
But she and husband Stuart, 31, decided not to terminate the pregnancy and instead try to give their kids the best lives possible.
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“We were faced with the decision of do we continue with the pregnancy and we had to make it quickly,” Mrs Webber said.
“If we decided to go through with the termination, I’d have had to take a tablet to stop the heartbeat and the doctor would deliver the baby.
“I knew in my heart I had to have Theo. He had as much right to live and we knew we’d give that baby the world and the best quality of life possible.
“It was also so Oscar didn’t feel isolated as someone had the same condition as him and they were in it together. It’s created that strong bond.”
Pelizaeus-Merzbacher Disease affects one in 900,000 children in the UK, and causes progressive deterioration.
Mrs Webber has given up her job as a property manager to care for her sons, who have been given a prognosis of around ten years.
Oscar uses a frame to walk and has a wheelchair and has physiotherapy and water therapy to help his movements.
His condition will deteriorate over time, as will Theo’s, as their muscles become stiffer.
“Oscar has the biggest smile in the world – he just lights up the room,” Mrs Webber added.
“He’s created the most beautiful bond with my nine-month-old. We’re watching them grow and flourish together.
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“It’s an awful situation we’re in, but we’re making the best of it.
The family have set up a GoFundMe page to raise cash to help with the cost of treatment not covered by the NHS.
