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When Charli and her husband, Oli Dimelow, welcomed their son Teddy into the world, they had no idea of the diagnosis to come.
The couple, who live with Teddy and their daughter Harriet on the Isle of Man, just off the United Kingdom coast, had gone through all the usual scans and checkups before his birth, with nothing of concern flagged.
“He was born four weeks early and, after birth, he was thoroughly checked over by the maternity team and also examined by a pediatrician,” Dimelow told Newsweek. There was no reason to think anything might be amiss. “To us, he was simply our beautiful little boy,” she said.
The first sign Teddy might be a little different came when he was around 4 weeks old.
“He was admitted to the hospital with bronchiolitis,” Dimelow said. “During that admission, one of the nurses mentioned he had a sandal gap between his toes.”
A sandal gap is noticeably wider-than-usual space between the big toe and second toe. Alongside a photo of a newborn’s foot with the gap, Stanford Medicine explained: “Another physical finding in many infants with Down’s syndrome is an increased gap between the great and first toes. While this finding can occur as a familial trait, when it occurs in constellation with other features of Down’s, it supports the diagnosis.”
A Period of Uncertainty
The observation marked the beginning of what Dimelow describes as a “period of uncertainty,” as different healthcare professionals and pediatricians offered often contradictory opinions about what it could mean for Teddy.
Some felt there was nothing to suggest Down syndrome, while others weren’t so sure.
“It became incredibly confusing, and we were left constantly questioning what was going on and searching for answers,” Dimelow said.
At the same time, Teddy wasn’t gaining weight as expected for his age. At 8 weeks old, the family was referred to a pediatrician and, after some discussion, it was decided Teddy should have a blood test to determine whether he had an extra copy of chromosome 21, which would indicate Down syndrome.
Waiting for Answers
That appointment was a “difficult” experience for Dimelow.
“There were mixed messages, contradictions, and a huge focus on everything Teddy might never do. We left feeling frightened and completely overwhelmed,” she said. “It has taken me years to work through those feelings.”
Then came the blood test itself and the nerve-racking two-week wait for the results.
“We were told that if the results were negative, they would simply write to us,” Dimelow said. “If there was anything else to discuss, we would receive a phone call asking us to come into the hospital. So when the phone rang to arrange an appointment, we already knew what the outcome was likely to be.”
Receiving the Diagnosis
The subsequent appointment was another dark moment for Dimelow. She recalled the doctor who confirmed Teddy had Down syndrome began the conversation with the words “I’m sorry” and remained “overwhelmingly negative” throughout.
“We were taken through a long list of medical conditions, complications, and challenges that could happen throughout Teddy’s life,” Dimelow said. “As parents receiving an unexpected diagnosis, it was devastating. We left believing our son’s future would be defined by everything that might go wrong, rather than by the little boy sitting in front of us.”
Looking back, Dimelow understands why the doctor felt obligated to discuss all the potential challenges that lay ahead. She just wishes there had been more “balance” to the conversation.
“Nobody talked to us about the joy, the love, the laughter, or the amazing life that was still ahead of us,” she said. “Nobody told us that Teddy would simply be Teddy.”
A Future Different From What They Feared
Dimelow recalls being dogged by a “fear of the unknown” in the period following Teddy’s diagnosis.
“It took time to realize that we weren’t grieving Teddy,” she said. “We were grieving a future we’d imagined, without yet knowing what our real future would actually look like.”
A few years on from that diagnosis, the reality of life with Teddy could not be further from what they feared.
“Today, Teddy is funny, determined, mischievous, affectionate, and brings so much joy to our family every single day,” Dimelow said. “The future we feared simply never arrived.”
Turning Their Experience Into Action
That experience inspired Dimelow and Oli to set up Teddy’s Trundle, an Isle of Man-based fundraising walk that raises awareness of Down syndrome and supports related charities.
Since launching the event, they have raised more than £30,000 ($40,285) for Positive About Down Syndrome (PADS), a parent-led organization that helps families access balanced, hopeful information and peer support during the vulnerable first days and weeks after a Down syndrome diagnosis.
Dimelow also continues to share Teddy’s story on social media, posting on TikTok under the handle @littlelegsbigadventures_.
“We want people to see the child before the diagnosis, challenge outdated perceptions, and, most importantly, give hope to families who may be standing exactly where we once stood,” she said. “If just one family feels a little less afraid because they’ve seen Teddy laughing, learning, and simply being himself, then sharing our story has been worthwhile.”
Contact Newsweek editors for this story: Rebecca Flood and Anthony Murray.
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