**Cambridgeshire Mother Raises Awareness for Fragile X Syndrome After Son’s Diagnosis**
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Chloe Wager, a determined mother from Cambridgeshire, has taken to social media to raise awareness about Fragile X syndrome following her son Oakley’s diagnosis. This genetic condition is known as the most common inherited cause of intellectual disability, and Wager’s journey illustrates the challenges many parents face in advocating for their children’s health.
Wager’s concerns regarding Oakley’s development began to surface on his first birthday. While many children around him were engaging in typical milestones like waving and clapping, Oakley was struggling to do the same. Despite her instincts to raise these concerns, she was met with assurances from healthcare providers that he would ultimately catch up. “I first raised my concerns to a health visitor when Oakley was 1 year old,” Wager recalls. “They said he’s a boy, he’ll catch up, but I knew there was something.”
As Oakley grew, his behavioural challenges became more pronounced. He exhibited severe separation anxiety, particularly from his father, Shane, and often repeated phrases from films and YouTube videos—a phenomenon known as echolalia. “Shane couldn’t even go to the toilet without Oakley freaking out,” Wager explained. “He repeats a clip from a movie he likes hundreds of times without knowing its actual meaning.”
Despite her persistent requests for assessments, Wager felt dismissed for what seemed like an eternity. After numerous failed attempts to secure evaluations from medical professionals, she took matters into her own hands by completing a self-referral for speech and language services through the NHS. This proactive step eventually set the wheels in motion for a deeper investigation into Oakley’s condition.
Initially, Wager suspected that her son might be diagnosed with autism or ADHD due to his exhibiting characteristics associated with both disorders. However, during a later evaluation, the professional suggested that his challenges might be linked to a genetic disorder. “The lady that carried out the assessment said, ‘I believe your son has a genetic disorder,’” Wager recalled.
Blood tests confirmed that Oakley had Fragile X syndrome, which can entail developmental delays and learning disabilities. This diagnosis is more frequently observed in boys than girls, as indicated by the Cleveland Clinic. The timing of the news added to Wager’s stress, as she was in the hospital with her newborn daughter, Indy, who had been born with a cleft palate and required special medical attention.
Wager described the moment she received the diagnosis as an overwhelming experience while she grappled with the complexities of caring for a newborn. She faced the additional emotional burden of feeling guilt over having unknowingly passed the condition on through her X chromosome. “That meant I started to feel a massive amount of guilt, something I still try to manage today,” she admitted.
Despite being informed that Fragile X syndrome is rare in females, Wager insisted that Indy should also be tested. “Every professional told me it’s so rare in girls, we don’t need to test,” she recounted. “But I was determined to know as soon as possible if she also had the condition, so I could put early interventions in place.” In a poignant turn of events, Indy was later found to have Fragile X syndrome as well.
Today, Wager emphasises the importance of trusting one’s instincts when it comes to children’s development. “If I could go back [I’d] tell myself that you’re not going mad and that all this chasing and pushing for answers is going to be worth it,” she reflected. “As a mum, you just have that gut feeling, and I’m so happy I listened to my intuition.”
To amplify her message, Wager began sharing her family’s journey on social media, noting that very few people have a comprehensive understanding of Fragile X syndrome. The response has been incredibly positive, with many parents reaching out for advice or sharing their own experiences with delayed diagnoses.
“The reaction has honestly been so lovely,” Wager said. “People get to see what a wonderful, happy boy Oakley is. I get messages from mothers asking for advice, and that’s exactly what I wanted to achieve.” Through her social media presence, Wager has not only found a supportive community but has also transformed her personal journey into one of education and empowerment for other families navigating similar challenges.
As Wager continues her advocacy work, her story serves as a powerful reminder of the importance of persistence in seeking answers for children’s health and the need for greater awareness of rare genetic conditions like Fragile X syndrome.