All my children might die before 35, says mum after results reveal rare condition
A mother said her 14-year-old son was diagnosed with a rare progressive condition which means he could die before 35, years after missed genetic results, and now fears her other three children may face the same fate.
Sarah Bingham, 39, from Weston-super-Mare, said her son Caleb nearly died at eight months old after having blood poisoning and bacterial meningitis.
After waking from a month-long coma, he “completely regressed” and acted like a newborn.
He remained non-verbal until age five, struggling with walking and socialising, and was diagnosed with autism at age 10 – as part of the diagnosis process, he had a genetic test, but Sarah said she never heard back about the results so assumed everything was fine.
It was not until 2025, when Sarah requested all of her son’s medical records, that it was revealed the genetic test showed he had a chromosome seven deletion.
After contacting the NHS’ Patient Advice and Liaison Service, Caleb had more tests and was diagnosed with Friedreich’s ataxia, which impacts coordination and speech, and may lead to loss of vision and hearing.
As Sarah and her partner Richard, 41, an engineer, are both carriers of the genetic condition, their other children, Phoebe, 12, Xavier, five, and Felicity-Jayne, three, are also getting tested.
Sarah, who was a social worker but is now Caleb’s full-time carer, said: “All I ever wanted to be was a mum, but I feel guilty for having my youngest two because if we had these results before they were born, I probably wouldn’t have had any more.
“I feel like it’s all my fault, because it’s genetic, and there’s so much sadness – what if they all die before they’re 35?
“I try to put on a brave face and I’m a strong person, but I’m exhausted from trying to hold myself together and my brain just doesn’t shut off worrying about everyone else.”
At eight months old, in March 2012, Caleb “nearly died” after developing bacterial meningitis – a rare, life-threatening inflammation of the membranes surrounding the brain and spinal cord – along with blood poisoning.
While in hospital, Sarah said Caleb’s heart stopped and he had to be resuscitated.
“We were told to say our goodbyes, it was just so painful,” she recalled.
But, after spending around a month in a coma, during which his hands and feet appeared black due to the blood poisoning, Caleb eventually woke up.
Sarah said that when he regained consciousness, he had “completely regressed” – he could not recognise anyone, had to relearn how to breastfeed, and “it was as if he was a newborn”.
She said it took around six months for him to begin making progress, but he remained non-verbal until the age of five and continued to be “below average” behaviourally.
“He’s never had any friends. It’s been hard for me to see as his mum – he’s always just been on his own in the playground,” she added.
Caleb was diagnosed with autism in 2022 at the age of 10, after five years of “tests and delays”.
As part of the diagnostic process in 2020, he underwent genetic testing to identify any underlying conditions, chromosomal abnormalities or spontaneous DNA mutations linked to autism.
Sarah said she never received any results and therefore “thought everything was fine”.
Over the years, Caleb struggled with balance and experienced pain in his legs, but this was often attributed to dyspraxia, which is common in those with autism.
After starting secondary school, Caleb began to struggle more socially – Sarah said that, as a result, his mental health deteriorated.
“He couldn’t mask and pretend everything was okay at school any more – he was in burnout,” she said.
At the beginning of 2025, Sarah began gathering evidence of Caleb’s autism to support her application for a specialist school, requesting his full medical history from his GP.
While going through the files, she discovered a report showing that the genetic test carried out in 2020 had identified a chromosome seven deletion, which can lead to a range of developmental, cognitive and physical challenges.
The report, seen by PA, had been addressed to Children’s Services from Bristol Genetics Laboratory, and Sarah said that prior to her discovery, the results had never been communicated to her or followed up.
She then made a complaint to the NHS’ Patient Advice and Liaison Service (PALS), and got Caleb an appointment with a geneticist in May 2025.
After further tests, Caleb was diagnosed with Friedreich’s ataxia in November 2025.
According to the NHS, Friedreich’s ataxia is a progressive condition affecting balance and coordination.
It can also cause increasingly slurred, slow and unclear speech, as well as weakness in the legs.
The condition may also lead to partial or total loss of vision and hearing, scoliosis, heart muscle problems, and loss of sensation in the hands and feet.
Sarah said she was told the condition could shorten life expectancy, with Caleb potentially not living beyond the age of 35.
“So many things clicked into place, because he’s had problems with his balance and walking since about nine years old – he walks as if he’s drunk,” she said.
“He can’t walk in a straight line, hop or jump, or fasten zips or buttons, and we were always told that was because of his autism.
“It’s frustrating because there’s a lot of guilt on my part now, I wish I had pushed to ask about the genetic testing earlier, but I just thought everything was okay.”
Sarah said Caleb was present when he received the diagnosis but “completely shut down” and did not want to discuss it further.
It was not until February 2026 that he spoke to her about it.
“It was probably one of the worst days of my life, to be honest,” she said.
“He said he didn’t want to be in a wheelchair – he has such a fear of being seen as different.
“He couldn’t accept it. He Googled the condition, saw that it’s life-limiting, and was crying his eyes out, he couldn’t even speak.
“He’s fixated on that now. All he can think about is that he’s going to die.”
Since then, Sarah has taken him on days out, including trips to London, and encouraged him to write a bucket list of things he would like to do – with Disneyland at the top.
She has set up a GoFundMe to help fund this.
As Friedreich’s ataxia is a genetic condition, and both Sarah and Richard are carriers, their other children are now being tested.
Sarah believes Phoebe and Xavier may also have the condition, while she remains unsure about Felicity as she is three-years-old.
Phoebe has scoliosis, while both she and Xavier have a wide gait and struggle with balance.
Caleb now has “deformed” feet that turn inward, and Sarah said Felicity’s feet are beginning to look “very similar”.
She expects to receive the other children’s results by around September 2026.
“I’m trying to prepare myself mentally, but I do doubt myself a lot, I’m already exhausted caring for Caleb,” she said.
“We would need carers, and we’d have to move to a bungalow.
“We’re currently renting and can’t make adaptations, so on top of everything, we’re trying to find a suitable house and move.”
Day-to-day, Sarah said she is “very good at coping” and tries not to let it overwhelm her.
She said she is currently on the waitlist to receive therapy through the NHS, after receiving Caleb’s diagnosis.
However, she added: “When I stop and think about it, the trauma from when Caleb was in hospital as a baby all comes back, and I never really dealt with it.
“It feels like it’s all happening again, but worse.
“I just wish there was more awareness about the condition, I haven’t met anyone else with it, and it’s just so scary.
“We’re all just trying to stay as positive as we can.”
To donate to her fundraiser, visit: www.gofundme.com/f/making-memories-for-caleb.
A spokesperson from Sirona Care and Health, who now manage Children’s Services in the Weston-super-Mare area, said: “To protect patient confidentiality, Sirona never comments on individual cases.
“We strive to provide the best possible healthcare at all times, and to learn from all issues and concerns raised with us by patients.”
