A family who have been battling for years to find a treatment for their non-verbal son believe they’ve finally found a breakthrough after watching a Netflix show.
Toby Woodier, now 11, was nine when he was diagnosed with a rare genetic disorder Syngap1 and is unable to speak. His parents Helen, 48, and Craig Woodier, 51, are now seeking help abroad after watching the show Lucca’s World last month. The programme features a treatment called Cytotron therapy – by a company which claims to use non-invasive radiofrequency pulses to stimulate brain cell regeneration.
The treatment is available at a clinic in Mexico and not on the NHS, so Helen and Craig are now hoping to raise £45k to cover the treatment, flights, and accommodation for a 32-day stay in Mexico. Currently, the NHS uses Cytotron machine-based therapy to treat certain cancers – but not Syngap1.
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According to online NHS advice, there are no treatment options available for Syngap1 in the UK, but the NHS offers various therapies and supports to manage symptoms like seizures and developmental delays. The couple said they hope the treatment will be life-changing for Toby and it will allow him to live a more independent life.
Some parents have criticised NeuroCytonix and its lack of robust scientific evidence supporting its efficacy. The company did not respond to an opinion piece from the Guardian over such allegations.
Helen, an early years practitioner, from Poulton-le-Fylde, Lancashire, said: “We would never forgive ourselves if we didn’t give everything a go. It is a non-invasive treatment, and there are no side effects.
“The hope is that Toby will be able to talk, he is so desperate to talk. He can say four to five words, he can say letters, he just can’t blend them together. We also hope that the treatment can help with his behavioural issues, we need to give it a go – we need to give it a chance.”
Helen and Craig, who realised their child Toby was not meeting developmental milestones such as feeding properly, faced a parent’s tough journey. At 18 months, Global developmental delay was the initial diagnosis until the Genomes Project led to identifying Syngap1 in August 2022—a rare genetic disorder causing intellectual disability, seizures, among other issues.
Helen said: “It was a shock as none of our other children have this, we were also tested and we don’t have this disease either. As a mum, you worry that you did something during your pregnancy to cause it, you carry that guilt.”
Craig, a full-time carer for Toby, added: “It was a relief in a way, we finally had an answer at last – so many people can go undiagnosed. His diagnosis allowed us to do more research into it as it is an extremely rare condition.”
For Helen, inspiration struck after watching “Lucca’s World,” the true tale of groundbreaking treatment for cerebral palsy on Netflix, illuminating a potential new path for Toby.
Following the inspiration of a touching film, Helen and Craig delved into a potential life-changing therapy for their son—treatment by a Cytotron machine available only at NeuroCytonix in Mexico. Helen said “The film was a true story based on a mum and dad whose son was born with cerebral palsy but they never gave up hope.
“I watched the film and they spoke about the treatment, at the end of the film they said how Lucca can talk and walk. I messaged Craig myself and told him – we then did our own research.”
After the film sparked their pursuit, the couple got in touch with a neurologist from NeuroCytonix, who confirmed that Toby could undergo the therapy. Toby stands as the first patient slated for Syngap1 treatment, with the aspiration that it will enable him to speak.
Craig expressed his optimistic outlook: “If the treatment is successful, it would be amazing for people to see. This would give hope for so many other families who have children with special educational needs. It is not about the money, we want to be able to help as many families as possible.”
Remarkably, Toby’s siblings—Zach, 24, Beth, 22, Isobel, 15, and Abi, 10—are all rallying together to support fundraising efforts. With the community backing them, Helen gratefully acknowledged, “The community spirit has been amazing, thank you so much to the people who have donated. You do not know the difference it can make to Toby’s and our life. If this treatment works, it would help him gain more independence.”
Toby’s parents, Helen and Craig, have shared their delight in seeing their son’s happy personality flourish despite his struggles. “Toby is a joyful, funny, loving boy who adores the Blackpool Tower, the circus, fireworks, music, and flashing lights,” Helen said.
She proudly added, “He loves to happy flap and jump while watching his favourite YouTube videos. Toby can say mama, dada, nana, and yeah, and he knows all the letters of the alphabet. He can spell his name but struggles to blend sounds into words or say his name aloud. His desire to talk shines through as he tries so hard.”
Those inspired by Toby’s story can contribute to the family’s fundraiser here. The family also welcomes the public to follow Toby’s journey on their social media page at The Trouble with Toby.
