A mum whose son was diagnosed with a rare form of cancer is urging other parents to trust their instincts after a small change to her baby's eye revealed the devastating disease.
Jessica, 35, and Lee Neal, 38, from Nottingham, first noticed something had changed with their son Ted's eye when they were away on holiday in Wales.
Noticing their little one's eye had become misshapen - and thinking it was getting worse as the days went by - the couple took Ted straight to hospital as soon as they got home.
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"I couldn’t put my finger on what was different about it, it wasn’t inflamed or sore, but it was starting to look like it was protruding," said Jessica.
"Throughout the week it was gradually becoming more obvious and when I pointed it out to Lee and he could see it too.
"When we got home, we took him to the emergency department at Nottingham’s Queen’s Medical Centre, really hoping that we were overreacting."
Sadly, tests revealed that Ted had a rare cancerous tumour in one of his sinuses. He was diagnosed with unspecified sarcoma, which has now been named as mesenchymal chondrosarcoma, in his ethmoid sinus.
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"I was expecting them to tell us nothing was wrong - but they didn't," Jessica continued.
"As parents it's the worst thing you could find out, and the unknown type of sarcoma is incredibly rare and so is where it was in Ted's body, so finding out it's not going to be easy to treat is the worst thing.
"There's no known treatment plan and there's no known process.”
Ted had six rounds of chemotherapy as well as an operation in December 2021.
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Ted was able to spend Christmas with his family, but in the new year, the parents noticed a lump on his forehead. An ultrasound showed it was Ted’s brain pushing forward, due to a gap in his skull which had been removed during surgery.
“He had to be rushed for emergency surgery to have a drain put in to relieve the pressure,” Jessica said.
“We were actually told he was cancer free at that point. But Ted started to go down hill and doctors were desperately trying to work out why.”
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Just a few weeks later, a test revealed the cancer had spread to Ted's brain and down his spinal cord. Sadly, doctors told the family there was nothing more that could be done and on 9 April this year, Ted passed away at the age of 16 months.
“I’m so glad I trusted my instincts as I think we would have lost him sooner if I hadn’t. It gave us that eight months with him."
“Nothing prepares you for losing a child. But we’ve kept busy and set up a charity in his honour to help families with a seriously ill child or bereaved family have a peaceful getaway.
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“We’re doing a walk for Ted every year on the day he died to raise money. I have so many happy memories from the last eight months Ted was with us - even though it was tough.
“I would urge anyone to trust their instincts if they think something is wrong. Even if it just gives you peace of mind.”
You can find out more about The Little Ted Foundation here.
Topics: Health
Lucy Devine