Music teacher who ‘discovered’ Michael Jackson reveals when she knew he was a star
The music teacher who ‘discovered’ Michael Jackson can still remember when she first heard his voice – as he sang a hit from the Sound of Music.
Anita Hill, 91, of Gary, Indiana, who honed Jacko’s talent before he became the face of the Jackson 5, has spoken out ahead of a new biopic coming out later this year.
Hill ‘discovered’ the King of Pop by putting him in a choir as a little boy after hearing the unmistakable melody in his voice in the tune Climb Every Mountain.
Before that even Jacko’s parents didn’t know he could sing.
“Michael, which is slated to hit theaters on October 3 will star MJ’s nephew, Jaafar Jackson — the son of Jermaine.
Hill shared her thoughts on the upcoming film, memories of his early days, and reflects on the tragedy that ultimately took over Jackson’s life.
“He looks like him automatically,” she said of Jaafar. “No surgery or nothing. He looks just like him.”
Although Hill doesn’t know if her character will be in the film, she expressed hope that the story will capture the essence of Jackson’s impact.
“I hope it covers all of that. Things that he did to make people happy, and all of the things that he tried to do and the way he kept going, he kept singing,” she said.
“Whatever happened, he was right there and he enjoyed it. He loved it,” she added. “And he has family, and now they’re trying to imitate him. So he was a leader.”
As his music teacher at Garnett Elementary School in Gary, Hill recalled the early years of the King of Pop before he became the face of the Jackson 5.
She was sent to the school by the Gary Community Center as a second music teacher when she first encountered young Michael.
“There were two music teachers, another lady and myself,” Hill recalled.
“When I was there, the principal asked me to prepare a program for the teachers association that was having a meeting.
“I had to try to walk around and find something to do.
“So I listened to all my different classes and I heard a couple of boys singing pretty good, and I told them to come to the office, let me listen to them.
“And I started listening. Michael, who was probably six years old at the time, his voice was so melodious and stayed on pitch and he was very good.”
Hill taught him “Climb Every Mountain” from “The Sound of Music,” despite him being so young that he couldn’t read yet.
She says his parents — Joe and Katherine — were unaware of his vocal talent until they saw him perform at the school event.
“His parents didn’t know he could sing either,” she said. “They heard him for the first time.
“So after that, they started using him and I started using him myself because I was in charge of the choir, had a hundred kids in the choir and he was the only little one.
“I didn’t use little children. I had fifth and sixth graders, and he was so good I just added him with the group.”
Hill noted that Jackson was much younger than the other choir members, but his talent made him stand out.
“He was a baby and he was not really old enough to be in the group that I put him in, but he could sing and had a beautiful voice,” she said. “His memorization was fantastic.”
She also recalled how his natural showmanship became apparent early on.
“I just realized when I was thinking about him yesterday, when he was in the choir that I had, they marched in to a rhythm,” she explained.
“And by him being the smallest, he led the group in the march to the stage and we did our performance.
And also some of the songs we had dancing with it, and he would dance just as well as the big ones. So I just realized that started his dancing career also.”
Hill described Jackson as “very nice” and “very kind,” saying he had an effect on his classmates.
“The main thing about him volunteering to sing, other little kids started singing too,” she said.
“In fact, they were angry with me because I didn’t put them in the choir. I did it with him, but I couldn’t explain to them that it was because his voice texture was different.”
She also remembered how dedicated Michael was to his talent.
“Every time I would ask a volunteer, his hand would automatically go up,” she said. “Anytime you ask him to sing anything, he would sing it. And if he didn’t know, he would try.”
Even at a young age, Jackson’s abilities were beyond those of his peers.
“There was no comparison in voice. None. None whatsoever. He could sing low like a bass, he could sing high like a tenor. His voice could fluctuate up and down.”
Although she recognized his immense gift, she admitted she never imagined just how far he would go in his career.
“I didn’t really think he’d get as far as he did, even though he was good,” she said. “I was really shocked and happy.”
Reflecting on his life struggles later on, Hill shared her thoughts on his challenges with fame and health.
A far cry from the little boy Hill knew in the 1960s, Jackson was twice accused of child molestation and became addicted to prescription medication over the years.
He died on June 25, 2009 from propofol intoxication at the hands of his personal physician, Dr. Conrad Murray – just weeks away from performing his comeback “This is It” shows in London.
“I really think he became addicted to drugs unintentionally,” she said.
“You want to feel a certain way, and I think he just wanted to feel good and that was it. A lot of them do that.
“In order to be a performer, you have to feel a certain way to get out there on that stage in order to do like you did every day.”
Hill also reflected on Michael’s changing appearance over the years, particularly his skin condition.
“When he first did the song for me, he had a little small afro and he was tiny,” she said.
“And then as the years passed, actually, some of his skin looked like it changed on its own, because you can’t really change your face without changing the body.
“But his whole body, his arms — I think I could see his arms and hands — and they were all the same color as the rest of his body. So that’s what always concerned me.”
In 2009, Hill spoke at Jackson’s memorial at Steel Yard baseball stadium in Gary.
Recently, two Jackson brothers visited Gary when a music program was named after the Motown group.
“Tito and Marlon were here and I went to a program,” Hill said.
“One of the schools here started a music program, a new building, and named it after the Jacksons. I took a picture with them. They come to the city quite often.”
She also attended a performance honoring Jackson’s legacy in 2020.
“I went to New York to see the films they had about him,” she said. “They selected other children that could imitate him.
“The boys were good. They really imitated him pretty good, but they weren’t Michael.”
As an influential force behind the legendary King of Pop, Hill shared words of encouragement for those striving to achieve their dreams.
“Whatever you start, keep on doing it,” she said. “You are going to become successful if you don’t give up.”
“I’ve been digging graves for 40 years – I love the nature and peace of a cemetery”
The UK’s longest serving gravedigger has no plans to hang up his shovel – after working in cemeteries for more than 40 years.
Mick Woods, 61, says he enjoys being out in nature and using his hands to give people a “respectful” send off.
Mick has spades of experience after digging more than 20,000 graves in cemeteries around Nottinghamshire since he started in 1984.
The grandad still digs more than four graves a week at Mansfield Cemetery and says the deepest can take nearly two days to complete.
Mick, who lives near the cemetery, said: “At the end of the day you can go home satisfied that you’ve helped someone with their bereavements and know that their loved ones have been laid to rest with respect.
“It’s a long process and in their grief they need to know their loved ones are respected from the minute they go from the undertaker to the last place where they’ll be laid to rest.”
Mick started digging graves after working as a gardener aged 16 before getting a job at Mansfield Cemetery in 1984.
He admits that the essential job can be risky and he has escaped being buried himself on several occasions due to graves collapsing following heavy rain.
On another occasion the ground gave way around the edge of a grave and Mick almost tumbled into the hole but was saved when he scrambled out.
He said: “Everyday is different and I like being outdoors, you have to take the rough with the smooth with the weather and you get to meet some interesting families and you get to know all about their loved ones.
“At Mansfield we’re up to about 40,000 graves, and when I started there were only about 20,000, so I’ve done about 20,000 graves or even more.
“We go in peaks and troughs but it averages out about three or four a week over the four cemeteries that we work over.”
While the average grave used to take half a day to prepare, Mick can now have one ready in under 45 minutes thanks to modern machinery.
He added: “In the early days when we used to do everything by hand and it could take all day or more to dig a six foot grave.
“These days we do get the tractor to do most of the digging and then we have to go down and make sure the measurements are right and that we haven’t disturbed the coffin if it’s what we call a ‘reopen’.”
Mick and his team usually carry out exhumations when people move away and want to relocate the remains of their loved ones to a cemetery nearby.
Mick says his job requires him and his team to have a good sense of humour and have people make jokes at his expense.
He added: “When people asked me what I do, I just blurt it out – grave digger/gardener – that’s what am and what I have done for last 40 years.
“You do get the odd joke like – ‘you must work in the dead centre of Mansfield’ or ‘your job must be dead boring’ but I just let them wash over me. I am quite happy doing what I am doing and that’s the main thing.”
Despite his gavedigging career, Mick admits he still hasn’t decided if he wants to be buried or cremated when his own time’s up.
He added: “I don’t really know which I want, buried or cremated, to be fair.
“It’s a funny one, I’m getting to that age where I should be making my mind up where I want to be.
“I always joke with the girls at the crematorium that I’m going to go up the A614 and be chucked over the hedge and let the pigs eat me. So I really don’t know.
“I’ve dug family graves where we’ve had wives, husbands and uncles. Thankfully I’ve never had to dig one for my own family.
“Usually we do try and dig a couple of days in advance so we’re ready for the day the funeral takes place.
“I don’t know many people who have done it for as long as me, they all seem to come and go.
“Obviously the old boys who trained me have all gone now. It looks like I’m going to be here until retirement and then put my shovel up at the end.
“I’m the longest running digger, I’m the dad of the team.”
Villagers win ‘David and Goliath’ battle to save last working phonebox
Battling villagers have won their fight with BT to save their last working red phone box after the telecom giant said it was only used nine times last year.
Residents of Sharrington, Norfolk, were determined not to see the iconic red K6 disconnected and even queued up earlier this month to use it.
The K6 was the first red telephone kiosk to be used extensively outside London and many thousands were installed.
BT wanted to disconnect the box – which is one of only a handful of its kind left in the county – due to its lack of usage.
However today (March 25) it was announced the phone would stay working in the small village.
Steffan Aquarone, Liberal Democrat MP for North Norfolk, said: “It just goes to show you that communities can achieve incredible things when we stand together to protect what matters to us.
“The K6 phone box is a lifeline in this small, rural village.
“When BT said they were planning to remove it, the whole of Sharrington stood up and said ‘absolutely not’.
“It’s so heartening to know that this phone box sign will continue to light up this small, rural corner of North Norfolk for many evenings to come.”
Derek Harris, who is led the resistance against BT, had previously described the campaign as a ‘war’.
He said: “It’s a David and Goliath situation.
“It is a war between the village and BT and we are trying to enlist as much help as we can.
“We want this phone box to remain functioning.”
The 89-year-old, who has lived in the village for 50 years, added: “We are an elderly population who are not great with technology.
“Some of them do not have iPhones and I am not sure they even have land lines.”
Locals claim some elderly locals still rely on the box and because mobile phone coverage can be unreliable in north Norfolk, it is a useful lifeline for ramblers.
Many villages which have seen their phone boxes disconnected have kept them as mini-libraries and information centres or to house defibrillators.
A BT spokesperson confirmed they had decided not to remove the phone.
Girl, 5, Believed to Be the Only Person in the World Named Snow White
Meet the only girl in the world called ‘Snow White’ – who is her mum and dad’s little princess.
Mum Lisa Morphy, 45, picked the name for five-year-old Snow-White Jennifer Morphy after she feel pregnant with a much-wanted girl after having three boys.
Lisa, from Northampton, said: “We knew she’d be our little princess. When my son suggested we call her Snow-White, I thought it was amazing.
“Everyone thought I was mad when I told them the name.
“She loves it – if people call her Snow, she corrects them – and she tells everyone how she’s a princess.
“Airport check-ins can be hard, and people turn around or whisper when I call her name in public, but I don’t care.”
Lisa had three kids before she was hospitalised with a cyst wrapped around her ovary.
Doctors had to remove 75 per cent of one of the ovaries and she was warned it would be unlikely she could fall pregnant again.
But she had always dreamed of becoming a girl mum so was delighted when she found out she was pregnant with a daughter in late 2018.
Lisa and husband Richard, 43, who owns a road sweeping business, knew she’d be the “princess of the household”.
She has a Disney-themed bedroom, loves singing and dancing, and a ‘princess’ attitude bossing around three older brothers.
Lisa is also mum to Jack, 23, William, 16, and Teddy, 12.
The mum loved the name “Snow” but Teddy suggested “Snow-White”.
Lisa said: “Richard was on board, and I loved it.
“Snow White is the OG Disney Princess and I know she’d be a princess in a house full of boys.”
The parents had a few raised eyebrows from their own parents when they shared the moniker.
Lisa said: “The older generation didn’t really get it – they said she’d be bullied, but people bully regardless of name.”
She said when they went to register their daughter’s birth at six weeks, the staff had to go and make a call to ensure the name wasn’t copyrighted by Disney – which fortunately it wasn’t.
Lisa said they introduced Snow-White to Disney when she was very young and she has a Snow White themed bedroom as well as a selection of costumes.
The family are going to see the new Snow White movie, starring Rachel Zegler, next week and Lisa says her daughter is very excited.
Lisa said: “She’s a total princess- she makes my 16-year-old carry her down the stairs in the morning.
“If she gets told off by us, she goes to one of her brothers to get a cuddle. They’re super protective of her.”
The family are used to heads turning when they address her out in public.
But they all adore the name and think it suits her perfectly.
Lisa added: “Not everyone understands it, but we’ve raised her to be proud of her name and she’s very confident in who she is.”
Man who claims to have the world’s oldest cat celebrates her 30th birthday
A man who claims to have the world’s oldest cat says she has just celebrated her 30th birthday – complete with a cake with her face on.
Leslie Greenhough, 70, believes his tortoiseshell moggy, Millie, who was born in 1995, is currently the oldest living feline.
The moggy was first owned by Leslie’s late wife, Paula, 55, who first got Millie in 1995 – when the kitten was three months old.
Leslie said the cat’s long life is down to “lots of treats” including “cuddles on the sofa” and Buxton water.
And to celebrate three decades, Leslie decided to a get a cake made with her face on complete with 30 candles.
A big fan of attention, Millie starts her day “messing” about with Leslie before jumping up onto his knee to sit on the back of the sofa in the sun.
Leslie, a former storekeeper, from Stockport, said: “It was a fantastic day, it is such an achievement that she has turned 30.
“I had a birthday cake made with her face on. It was such a hot day she was licking all the cream off.
“My life ambition is to get her in the Guinness Book of records, but I can’t prove her age.
“The only person who can do that is my late wife who sadly died five years ago.”
Leslie met his wife on plenty on the dating site Plenty Of Fish in 2012, and he was introduced to Millie after he over heard her ‘meowing’ in the background of the calls.
The couple got engaged in 2013 on Valentine’s Day and married two years later in 2014.
Leslie had owned a cat once before as a child, named Blackie, but hadn’t had a pet in several decades, until meeting Millie.
He said: “Blackie used to follow me everywhere she was born in a paper mill and such a sweet thing.
“Millie was such a sweet cat when I first met her.
“Over the years Millie was bullied by other cats the her neighbourhood, so she stopped going out and became more of an indoor cat.
“She’s developed a cautious attitude – she’s very shy.
“I think that’s helped her live longer.”
Leslie’s wife Paula sadly passed away four years ago, in 2020, after contracting Covid-19.
His wife’s passing also affected Millie, who struggled to eat after losing her owner.
He said: “It was incredibly difficult on both of us.
“Millie and I had bonded before she died, she would sit on my lap and my wife said she could see how much the cat loved me.
“I think Millie knew my wife wasn’t well.
“Millie wouldn’t eat anything at first, I used to give her prawns and chicken, but over time she’s back to eating cat food.”
Now 30, Leslie credits Millie’s longevity to 12pm wake-up calls, Buxton water and a diet of prawn and salmon.
“She keeps herself to herself, she will wake up around dinner time and I will mess about her with for 30 minutes”, Leslie said
“She only drinks Buxton water and has a diet of salmon, prawns, chicken and tuna.
“Millie likes to do her own thing, I will find her either asleep behind the sofa or asleep in my bed.
“Sometimes she will play out in the garden – a cat is a cat really.”
Han Solo’s blaster set to fetch $2.5m at auction
Han Solo’s blaster from the original Star Wars film is up for auction.
Los Angeles-based Studio Auctions’ claim the prop weapon is the finest, complete version ever brought to market and could fetch at least $2.5m.
The company say the futuristic space gun was used by Harrison Ford’s character in 1977’s Episode IV – A New Hope.
Studio Auctions’ CEO, Brad Teplitsky said the blaster came from a consignor that contacted him after hearing him on a radio broadcast discussing a recently disqualified replica Han Solo blaster.
He explains: “I met the consignor with a little trepidation. I mean, we’d just done months of backflips trying to authenticate a blaster that didn’t pass muster and was proven to be just a very good replica.
“The upside was, we’d become intimately aware of many nuanced “tells” in knock-offs. So, examining this new blaster made it immediately clear that it exhibited none of those disqualifying hallmarks or features.”
“Once I saw the supporting paperwork and provenance, my heart leapt into my throat. So, we set about doing our diligence in authenticating the prop. The case supporting this blaster just grew and grew.”
The prop comes with “impeccable documentary provenance” and Studio Auctions says it has been authenticated by the person who designed it, Academy Award Winner, Roger Christian and by Jason Joyner, considered by many to be the foremost expert on Star Wars props.
The blaster was constructed using an actual antique German pistol, a 9mm Mauser C96, as the base.
Roger Christian said: “I have seen several purported Han Solo Blasters over the years which I could not authenticate. This is the first blaster I have seen that is consistent with the features of my original and with documentation to back it up which bears the serial number on this Mauser.”
Marc Wanamaker, Film Historian, Consultant to the Academy and 20th Century Studios, adds: “This is one of the most iconic props to come to auction in the last 10 years and should fetch at least $2.5m at auction.”
The sale is online from 10 May at Studio Auctions.
Thousands of DVDs dumped in charity’s skip – including several pirate copies
A charity shop was stunned when someone ‘donated’ – 2,500 DVDs.
Cornwall Hospice Care has urged people not to use their sites as a “dumping ground” – after the discs were left in its electrical goods skip.
The charity said the DVDs were left in outside its Bodmin in Cornwall donation centre in two separate incidents.
It said that many of the legitimate DVDs had become unsaleable as they had been rained on or were broken.
Volunteer and staff removed the items from the skip and put them in one of its waste bins that they pay to have emptied.
The charity’s Facebook post read: “This is unacceptable and it is illegal (as it is fly-tipping) and it is taking money directly from our hospice care.
”It’s possible the person doing this thinks that they are doing good and donating to us so we’d like to share this message in the hope it reaches them.
“You can only donate to our donation sites when they are open. Please do not use us as a dumping ground.”
The charity is running a campaign to encourage people to only donate items that they or a family member might buy.
It said about 40% of items handed in cannot be sold due to their quality, condition or for health and safety reasons.
It added a full list of what items it can accept and where and when people could donate them was available on its website.
Man flew to Prague for 15 hours – for the same price as a day trip to London
A man flew to Prague for 15 hours after snagging $45 round-trip flights – and says it cost the same as a theater trip to London.
Robbie Watson, 31, decided to take a day trip to the city after searching for cheap flights and places with sunny weather.
He found $45 round-trip flights and flew from London Luton Airport with Wizz Air – arriving in Prague at around 8:30 a.m.
Robbie spent the morning doing a self-guided walking tour of the city before booking a communism and nuclear bunker tour.
For lunch, he went to a railway restaurant – where food is delivered by a toy train – before heading back to the airport.
Robbie arrived back in the UK just before midnight and says the trip was a “no-brainer.”
Robbie, a chartered construction manager from Luton, said: “Paying less meant I had to get an earlier flight, but I could make the most of my day.
“When you can spend the same amount as you would in London to visit a new European city and do something out of the ordinary, it’s a no-brainer.”
Robbie has been an avid traveler for the last nine years and has done over 30 day trips.
In June 2024, he decided to take a day trip abroad to escape the miserable, rainy summer in search of some sun.
He picked Prague after finding cheap flights and seeing that good weather was forecast.
After arriving in the city center around 9 a.m. on June 8, 2024, Robbie walked around to take in the sights.
He said: “My favorite part of the trip was just wandering and having no set agenda.”
Robbie paid $9 to visit the Old Town Hall and take in the city views from the observation deck.
He said: “This was 100% worth it for the panoramic views over the rooftops.”
He spent the next two hours on a communism and nuclear bunker tour – which cost $31.
Robbie said: “It was something out of the ordinary, exciting, and different.”
He stopped for a late lunch at a restaurant where meals are served by model trains – costing him $29.
Robbie went back to the airport at 7 p.m. for his return flight, but it was delayed by an hour, and he finally arrived back in Luton just before midnight.
The whole day cost him $120 – which Robbie says is the same as a day trip into London for lunch and a theater show.
He said: “When I’ve spent a Saturday in London, it would look like this: Train ticket: $25, parking at the station: $6, theater ticket: $63, lunch: $25.”
Robbie is hoping to do a day trip to Switzerland next with a group from a Facebook community dedicated to extreme day trips.
He said: “For people with less confidence in traveling, it’s really great because you can see what others are doing.”
“My favorite part of the trip was just wandering and having no set agenda.”
Breakdown of day trip to Prague:
- Round-trip flights – $45
- Day ticket for public transport – $5.50
- Old Town Hall – $9
- Nuclear bunker tour – $31
- Late lunch – $29
- Total cost – $120
Robbie’s tips for scoring the best value day trips:
- Book directly with low-cost airlines for the best fares
- Travel during off-peak times – such as January, March, May, September, and November
- Join free walking tours
- Eat like a local
Follow Robbie on Instagram @robbiewatson.
Mum’s shock as daughter’s condition is so rare doctors had never heard of it
A mum-of-three has spoken out about her shock after her daughter was diagnosed with an ultra rare genetic disease which only affects hundreds worldwide.
Florence Violet, aged just six months, was diagnosed with CHAMP1 in spring last year after her mum noticed she wasn’t reaching milestones, such as sitting up and babbling, as quickly as her two older sisters.
The disease is so rare that none of the doctors at St Luke’s Hospital, Bradford, West Yorks., had even heard of it after the young tot was diagnosed.
Mum Farrah Taylor, 36, said GPs originally put down the developmental delays to the fact Florence, now aged 16 months, had been born a month early.
She said: “I’ve had three children and I just knew that there was something not quite right, we had a lot of hospital admissions, she was poorly quite a bit.
“Every time I went to the GP or I’d take her to the hospital I’d get told the same thing ‘oh, she was born early.”
But the persistent mum trusted her instincts and didn’t back down.
After looking up baby Florence’s symptoms online a hospital doctor agreed to carry out genetic testing, which came back with the diagnosis.
The mum-of-three, who has given up her admin job to take Florence to her appointments, continued: “When we got the initial phone call from her doctor at the time, she rang me and she told me.
“I was so upset, and she said ‘calm down, we don’t know anything quite yet’.
“When we went to see her she explained that she’d never heard of it and none of her colleagues in hospital had heard of it.
“She said she reached out to people who she trained with in university and people she’s worked with in the past and nobody’s actually heard of it.
“That was the first red flag, being so scared – it’s the unknown that’s scary.”
According to the CHAMP1 UK charity, the disease affects roughly 1 in ever 52 million people, with around 170 documented diagnoses worldwide.
The problem comes from a mutation in the CHAMP1 gene, important for maintaining DNA and brain development, and can cause cognitive problems, physical disabilities, and other issues.
Mum Farrah says tests show neither she nor dad Jonathan Priestley, 36, carry the mutation.
Farrah said: “It was scary when we found out, I think it was more frustrating at first trying to get somebody to actually listen, instead of just saying ‘oh it’s because she’s premature’.
“It were more frustrating at first until we got the answers, and then it went from frustration to being very scared and upset.”
Now, 10 months on, the family is counting themselves lucky whenever young Florence reaches a milestone.
Farrah said: “She’s so smiley, she’s so happy. She’s doing so, so well.
“She’s exceeding what we thought she was ever going to do. That’s been quite a blessing because at one point we weren’t sure that was ever going to be the case.
“Every milestone she’s reached has been a celebration.
“When we saw her take her first steps we were in tears, even though I’ve seen it happen twice before with my two other children, this time around everything just feels more… I don’t want to say special, but it just feels more important.”
Family discover potential treatment for non verbal son on Netflix show
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.
