A mother from Weston-super-Mare fears her three other children may share the same rare genetic condition as her 14-year-old son, after discovering that test results were never communicated to her. Sarah Bingham, 39, said her son Caleb was diagnosed with Friedreich's ataxia earlier this year, a progressive condition that can lead to death before age 35. She now worries that her other children, Phoebe, 12, Xavier, five, and Felicity-Jayne, three, may also be affected.
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 at age 10, and as part of that process, genetic testing was performed in 2020. Bingham said she never received the results and assumed everything was fine.
In 2025, while requesting Caleb's full medical records to support a school application, Bingham discovered a report showing a chromosome seven deletion. She contacted the NHS Patient Advice and Liaison Service, leading to further tests and a diagnosis of Friedreich's ataxia, which affects coordination and speech and may cause loss of vision and hearing.
Bingham and her partner Richard, 41, are both carriers of the genetic condition, meaning each of their children has a 25% chance of inheriting it. The other three children are now being tested. Bingham expressed guilt over having her youngest two children, saying if she had known the results earlier, she might not have had more children. She said she feels exhausted from worrying and putting on a brave face.
