A toddler was diagnosed with a rare form of eye cancer after his parents noticed his eye colour changing from light blue to dark. Amy Waddle, 32, says the "horrible" experience left her with PTSD.
She noticed her little boy, Teddy, two, had developed a squint in June 2023 - and originally thought he had a lazy eye. However, a routine healthcare appointment in July revealed his squint was more serious - and he was referred for further investigation.
In September 2023, he was diagnosed with retinoblastoma - a rare cancerous tumour of the retina. Now, Teddy has a prosthetic eye - after his right eye was removed.
Amy, a stay-at-home mum from Crawley, West Sussex, said: "Some days I’m so sad because Teddy has one eye. I didn’t take much notice of his condition at first because I thought he may have a lazy eye."
Between June and August 2023, Amy and Teddy's dad, 45-year-old warehouse manager, Brian, noticed Teddy's eye-colour changing from bright blue to very dark blue. When Amy would take photos of Teddy, his eyes would glow a dark orange instead of the typical red.
Despite a Google search indicating it was normal for children's eye colours to change - Amy had a gut feeling it was something more serious. "I read his eye colour could change up until they were five," she added.
"When I took photographs with flash in a dark room, it glowed orange instead of red. I had a gut instinct that it was retinoblastoma, it’s the rarest eye cancer and the symptoms can often be missed.”
After seeing a healthcare worker in July, Teddy was referred for a hospital appointment the following month. Teddy has a history of febrile convulsions - seizures which occur in children with a high temperature.
He can become distressed when doctors get close to examining him - and eventually he was put to sleep during appointments. The tot underwent "awful" examinations where his parents had to hold him down to put in his eye drops and to put the gas mask on.
Amy said: "It was the most horrific experience watching that, the appointments where he needed to be under sleep were awful. We would have to take him into the room and put a gas mask on him and a cannula as he wouldn't let anyone touch him.
"I became anxious because he was unsettled." On September 15, Teddy was diagnosed with grade E retinoblastoma - the most severe form. He was told he'd need his right eye removed within two weeks.
“I didn’t cry and I asked when the surgery was happening," she said. "I had done a lot of grieving. It was a mother’s instinct and I knew this was the case.
"We were told within 2 weeks his eye would be removed. He needed an MRI to make sure the tumour hadn’t spread.”
Amy was told Teddy had also been blind in one eye for the last four months. She started to realise he was reaching all his milestones with just one eye to see.
"We didn’t know, he was fine naming colours and shapes," she added. "He was so bright we didn’t think anything of it.
"He was so wobbly on his feet tripping over and struggling on the stairs. I thought he was just a clumsy baby - in reality, he was learning with one eye.”
Amy admits she distanced herself from Teddy when she waited for his results as a coping mechanism. "The wait felt like 20 years.
"I looked at him and felt sick, like I’d vomit. It broke my heart to be around him. I detached myself from him because I feared the worst and my partner and I dreamt about his funeral for weeks."
Teddy's MRI results - which Amy and Brian received on 22 September - confirmed his cancer hadn't spread. His surgery date was scheduled for 27 September.
Amy said: “The night before, we stayed in the Sick Children’s Trust in Royal London. Teddy complained that his eye really hurt him, but there was nothing we could do.
"The next morning he was taken for an hour heavily sedated and he came around and started eating. He acted so normal. He wanted to get up and play. He got up and ran around with one eye.”
Teddy was given a genetic blood test - which confirmed it hadn't been passed down from his parents, and his younger brother Parker, six months, won't develop it. Teddy now has a prosthetic eye which needs to be taken out often to clean, and every six months he is put to sleep to check his eye socket.
The family hope to raise awareness for the condition and have thanked ‘The Children’s Eye Trust’ who have helped the family mentally and financially. Amy said: “Without them, we would be lost - they’ve been amazing.
"We’ve been given so many days out and respite breaks and money for travel when my partner didn’t work. During the wait, I lost so much weight, we couldn’t eat or sleep.”
Amy was also diagnosed with PTSD. "My partner and I are in therapy," she added. "He is worse now because he didn’t seek help in the beginning. We both have panic attacks, it’s a battle with our mental health.
"We have good days and bad days. But I’ve heard stories about other children and there is success. I’m lucky the doctors saved his life."
