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Appears in Newsflare picks
03:08
Family discover potential treatment for non verbal son on Netflix show
A family fighting for years for treatment to help 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 and can not 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 tumours.
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.
The couple said they hope that the treatment will be life-changing for Toby and it will allow him to live a more independent life.
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 noticed that their child Toby was struggling to feed as a baby and wasn't hitting his 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 paediatrician.
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 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."
Helen described watching Lucca's World on Netflix - a true story about a family who take their son with cerebral palsy for pioneering treatment - as a lighbulb moment.
Off the back of the film, Helen and Craig started research into Cytotron machine-based therapy - a pioneering treatment available at NeuroCytonix in Mexico.
Helen added: "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."
Shortly after watching the film, Helen and Craig connected with a neurologist from NeuroCytonix who approved Toby for treatment.
Toby's treatment has been approved for July 2024 and he will be the first person to be treated 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 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."
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 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."
Despite his challenges, Helen and Craig said that Toby is a "joyful" and "loving boy" who loves the Blackpool Tower and strobe light."
"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 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 wanting to donate to Toby's fundraiser can do so here: https://gofund.me/58b7190d
The family are sharing Toby's journey through social media at The Trouble with Toby.
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