A mother from Weston-super-Mare has said she fears her four children may all die before the age of 35 after genetic test results were overlooked for years. Sarah Bingham, 39, discovered in 2025 that her 14-year-old son Caleb had a chromosome seven deletion, leading to a diagnosis of Friedreich's ataxia, a rare progressive condition.
Caleb nearly died at eight months old from bacterial meningitis and blood poisoning, spending a month in a coma. After waking, he regressed and remained non-verbal until age five. He was diagnosed with autism in 2022, but genetic testing in 2020 was never followed up, leaving Sarah unaware of the deletion.
Sarah and her partner Richard, 41, are both carriers of the genetic condition, meaning their other children—Phoebe, 12, Xavier, five, and Felicity-Jayne, three—are now being tested. Sarah said she feels guilty for having her youngest two, as she might not have had more children if she had known the results earlier.
Friedreich's ataxia affects coordination and speech and can lead to loss of vision and hearing. Sarah, now Caleb's full-time carer, said she is exhausted from worrying. She described the discovery of the missed test results as devastating, adding that she tries to stay strong but struggles with the fear that all her children could die young.
