A family that has been fighting for years to find treatment for their nonverbal son believes 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 and cannot talk.
But parents Helen, 48, and Craig Woodier, 51, feel there is now light at the end of the tunnel after discovering a treatment on the show Lucca’s World.
Helen watched the show last month on Netflix and learned about Cytotron machine-based therapy – a non-invasive treatment that uses radio frequencies to regenerate tissue and destroy tumors.
The treatment is available at a clinic in Mexico and is not covered by insurance, so Helen and Craig are now hoping to raise $57,000 (£45k) to cover the treatment, flights, and accommodations for a 32-day stay in Mexico.
The couple hopes the treatment will be life-changing for Toby and allow him to live a more independent life.
Helen, an early childhood educator from Poulton-le-Fylde, Lancashire, UK, 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 the treatment can help with his behavioral issues. We need to give it a go – we need to give it a chance.”
Helen and Craig noticed that as a baby, Toby struggled to feed and wasn’t hitting key developmental milestones.
At 18 months old, Toby was diagnosed with global developmental delay and was put forward for the 100,000 Genomes Project by his pediatrician.
Through the study, managed by Genomics England, Toby underwent genetic testing and was diagnosed with Syngap1 – a rare genetic disorder that causes intellectual disability, seizures, and other developmental problems – in August 2022.
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 mom, you worry that you did something during your pregnancy to cause it – you carry that guilt.”
Craig, a full-time caregiver for Toby, added: “In a way, it was a relief – we finally had an answer at last. So many people go undiagnosed.
“His diagnosis allowed us to do more research into it, as it is an extremely rare condition.”
Helen described watching Lucca’s World on Netflix – a true story about a family who takes their son with cerebral palsy for pioneering treatment – as a lightbulb moment.
After seeing the film, Helen and Craig started researching Cytotron machine-based therapy – a groundbreaking treatment available at NeuroCytonix in Mexico.
Helen added: “The film was a true story about a mom 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 right away and told him – we then did our own research.”
Shortly after watching the film, Helen and Craig connected with a neurologist from NeuroCytonix, who approved Toby for treatment.
Toby’s treatment has been scheduled for July 2024, and he will be the first person to receive the therapy for Syngap1.
The hope is that after the treatment, Toby will be able to talk.
Craig said: “If the treatment is successful, it would be amazing for people to see.
“This would give hope to so many other families who have children with special needs.
“It’s not about the money – we want to be able to help as many families as possible.”
Toby’s four siblings – Zach, 24, Beth, 22, Isobel, 15, and Abi, 10 – are all getting involved to help raise funds.
Helen said: “The community support has been amazing – thank you so much to the people who have donated.
“You don’t know the difference it can make to Toby’s life and ours.
“If this treatment works, it would help him gain more independence.”
Despite his challenges, Helen and Craig say that Toby is a “joyful” and “loving boy” who loves the Blackpool Tower and strobe lights.
“Toby is a joyful, funny, loving boy who adores the Blackpool Tower, the circus, fireworks, music, and flashing lights,” Helen said.
“He loves to happy-flap and jump while watching his favorite 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 wanting to donate to Toby’s fundraiser can do so here: https://gofund.me/58b7190d.
The family is sharing Toby’s journey on social media at The Trouble with Toby.
