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<\/p>\nSarah says she ‘probably would not have had’ more children if she had been given the results<\/p>\n
06:56, 22 May 2026Updated 07:14, 22 May 2026<\/p>\n
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Sarah and Caleb<\/p>\n
A mother whose 14-year-old son was diagnosed with a rare progressive condition which means he could die before 35, now fears her other three children may face the same fate – after the results of genetic testing were missed. Sarah Bingham, 39, from Weston-super-Mare, said her son Caleb nearly died at eight months old after having blood poisoning and bacterial meningitis.<\/p>\n
After waking from a month-long coma, he \u201ccompletely regressed\u201d 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 \u2013 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.<\/p>\n
It was not until 2025, when Sarah requested all of her son\u2019s medical records, that it was revealed the genetic test showed he had a chromosome seven deletion. After contacting the NHS\u2019 Patient Advice and Liaison Service, Caleb had more tests and was diagnosed with Friedreich\u2019s ataxia, which impacts coordination and speech, and may lead to loss of vision and hearing.<\/p>\n
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Sarah said Caleb is fixating on the life-limiting nature of the condition<\/p>\n
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\u2019s full-time carer, told PA Real Life: \u201cAll 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\u2019t have had any more.<\/p>\n
\u201cI feel like it\u2019s all my fault, because it\u2019s genetic, and there\u2019s so much sadness \u2013 what if they all die before they\u2019re 35? \u201cI try to put on a brave face and I\u2019m a strong person, but I\u2019m exhausted from trying to hold myself together and my brain just doesn\u2019t shut off worrying about everyone else.\u201d<\/p>\n
At eight months old, in March 2012, Caleb \u201cnearly died\u201d after developing bacterial meningitis \u2013 a rare, life-threatening inflammation of the membranes surrounding the brain and spinal cord \u2013 along with blood poisoning. While in hospital, Sarah said Caleb\u2019s heart stopped and he had to be resuscitated.<\/p>\n
![\"Sarah](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/1_01KS73J0D4NHWC2F11VS9DCQFB.jpg\")
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Sarah and Xavier<\/p>\n
\u201cWe were told to say our goodbyes, it was just so painful,\u201d 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 \u201ccompletely regressed\u201d \u2013 he could not recognise anyone, had to relearn how to breastfeed, and \u201cit was as if he was a newborn\u201d.<\/p>\n
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 \u201cbelow average\u201d behaviourally. \u201cHe\u2019s never had any friends. It\u2019s been hard for me to see as his mum \u2013 he\u2019s always just been on his own in the playground,\u201d she added.<\/p>\n
Caleb was diagnosed with autism in 2022 at the age of 10, after five years of \u201ctests and delays\u201d. 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 \u201cthought everything was fine\u201d.<\/p>\n
![\"Sarah](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_01KS73HZH2TPMR9XMMJ5T3FFNH.jpg\")
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Sarah with Felicity and Xavier<\/p>\n
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 \u2013 Sarah said that, as a result, his mental health deteriorated.<\/p>\n
\u201cHe couldn\u2019t mask and pretend everything was okay at school any more \u2013 he was in burnout,\u201d she said. At the beginning of 2025, Sarah began gathering evidence of Caleb\u2019s autism to support her application for a specialist school, requesting his full medical history from his GP.<\/p>\n
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 Real Life, had been addressed to Children\u2019s Services from Bristol Genetics Laboratory, and Sarah said that prior to her discovery, the results had never been communicated to her or followed up.<\/p>\n
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Sarah’s daughter, Phoebe<\/p>\n
She then made a complaint to the NHS\u2019 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\u2019s ataxia in November 2025. According to the NHS, Friedreich\u2019s ataxia is a progressive condition affecting balance and coordination.<\/p>\n
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.<\/p>\n
Sarah said she was told the condition could shorten life expectancy, with Caleb potentially not living beyond the age of 35. \u201cSo many things clicked into place, because he\u2019s had problems with his balance and walking since about nine years old \u2013 he walks as if he\u2019s drunk,\u201d she said.<\/p>\n
\u201cHe can\u2019t 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\u2019s frustrating because there\u2019s 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.\u201d<\/p>\n
![\"Sarah](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_01KS73J21MJA8CT1CG622JWMVC.jpg\")
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Sarah and Caleb<\/p>\n
Sarah said Caleb was present when he received the diagnosis but \u201ccompletely shut down\u201d and did not want to discuss it further. It was not until February 2026 that he spoke to her about it. \u201cIt was probably one of the worst days of my life, to be honest,\u201d she said.<\/p>\n
\u201cHe said he didn\u2019t want to be in a wheelchair \u2013 he has such a fear of being seen as different. He couldn\u2019t accept it. He Googled the condition, saw that it\u2019s life-limiting, and was crying his eyes out, he couldn\u2019t even speak. He\u2019s fixated on that now. All he can think about is that he\u2019s going to die.\u201d<\/p>\n
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 \u2013 with Disneyland at the top. She has set up a GoFundMe to help fund this.<\/p>\n
As Friedreich\u2019s 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.<\/p>\n
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Sarah, Richard and their children<\/p>\n
Phoebe has scoliosis, while both she and Xavier have a wide gait and struggle with balance. Caleb now has \u201cdeformed\u201d feet that turn inward, and Sarah said Felicity\u2019s feet are beginning to look \u201cvery similar\u201d.<\/p>\n
She expects to receive the other children\u2019s results by around September 2026. \u201cI\u2019m trying to prepare myself mentally, but I do doubt myself a lot, I\u2019m already exhausted caring for Caleb,\u201d she said. \u201cWe would need carers, and we\u2019d have to move to a bungalow. We\u2019re currently renting and can\u2019t make adaptations, so on top of everything, we\u2019re trying to find a suitable house and move.\u201d<\/p>\n
Day-to-day, Sarah said she is \u201cvery good at coping\u201d 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\u2019s diagnosis. However, she added: \u201cWhen 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.<\/p>\n
\u201cIt feels like it\u2019s all happening again, but worse. I just wish there was more awareness about the condition, I haven\u2019t met anyone else with it, and it\u2019s just so scary. We\u2019re all just trying to stay as positive as we can.\u201d<\/p>\n