Sarah Bingham, a 39-year-old mother from Weston-super-Mare, faces a heartbreaking reality after discovering her 14-year-old son Caleb has Friedreich’s ataxia, a rare progressive genetic condition that could limit his life expectancy to under 35 years. This devastating diagnosis came to light only after crucial genetic test results were overlooked for years.
Caleb, who survived severe bacterial meningitis and blood poisoning as an infant, showed early developmental challenges. Although he was diagnosed with autism at age 10, the genetic testing conducted as part of his evaluation in 2020 revealed a chromosome seven deletion—an important indicator of his underlying condition. However, Sarah never received these results, assuming all tests were clear.
It wasn’t until 2025, when Sarah requested Caleb’s full medical records, that the missed genetic information was uncovered. Following a formal complaint to the NHS Patient Advice and Liaison Service, Caleb underwent further testing and was diagnosed with Friedreich’s ataxia later that year. This condition progressively impairs coordination, speech, and can lead to loss of vision and hearing.
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Because both Sarah and her partner Richard are carriers of this genetic disorder, their other three children—Phoebe (12), Xavier (5), and Felicity-Jayne (3)—are now being tested for the condition. Already, symptoms such as scoliosis and balance difficulties raise concerns about their health.
Sarah, a former social worker now dedicating herself to caring for Caleb full-time, expresses profound guilt and worry: “If I had received these results before, I probably wouldn’t have had more children,” she says. “I fear what lies ahead for all of them, and it’s exhausting trying to stay strong for my family.”
Caleb’s struggle extends beyond physical symptoms; after learning of his diagnosis, he experienced intense fear and despair about his future, particularly fearing dependence and wheelchairs. Sarah has since focused on making meaningful memories with him, including planning special outings and creating a bucket list topped by a trip to Disneyland.
The family is preparing for the immense challenges ahead, including seeking appropriate housing adaptations and therapy support. Despite the trauma resurfacing for Sarah, she remains determined to raise awareness about this rare condition and hopes for understanding and support.