Mom’s shock as daughter’s condition is so rare doctors had never heard of it
A mom-of-three has spoken out about her shock after her daughter was diagnosed with an ultra-rare genetic disease that only affects hundreds worldwide.
Florence Violet, aged just six months, was diagnosed with CHAMP1 in spring last year after her mom 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., UK, had even heard of it after the young tot was diagnosed.
Mom 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 mom 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 mom-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 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 the hospital had heard of it.
“She said she reached out to people 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 every 52 million people, with around 170 documented diagnoses worldwide.
The problem comes from a mutation in the CHAMP1 gene, which is important for maintaining DNA and brain development and can cause cognitive problems, physical disabilities, and other issues.
Mom 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 was 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.”
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.
We have a 32-year age gap but tied the knot after meeting through Twitter”
A couple with a 32-year age gap have tied the knot – after meeting through Twitter and falling in love while living 4,207 miles apart.
Heather McGreachy-Irwin, 36, and her wife, Sue, 68, bonded over their love of Star Trek despite being on opposite sides of the Atlantic.
The pair started messaging on Twitter and, after just two weeks, decided to video chat on Zoom – where they instantly hit it off.
Due to the pandemic, they couldn’t meet in person for a year, until Sue – originally from Florida, US – flew to London to see Heather.
They spent the next 20 months traveling back and forth, realizing their feelings for each other – despite both only having dated men before.
After coming out to their families, they eloped in a small Central Park ceremony in May 2023. The following month, Sue moved to the UK permanently.
The couple says their relationship has been “life-changing” and they hope to celebrate their marriage with family and friends in the future.
Sue, a retired project manager from Orlando, Florida, said: “The initial connection was because we were both huge Star Trek fans.
“I had recently won a competition to have a Zoom chat with Kate Mulgrew, and I was talking about it on Twitter.
“Heather saw it, responded, and that was how we connected.
“I think we both knew very early on that we had deep feelings for each other.
“We were both closeted at the time, but we reached the conclusion that we wanted to make the changes in our lives to be out.”
Heather, a mental health nurse from Luton, Bedfordshire, had only dated men when she met Sue on Twitter in December 2020.
Sue, who had been married for 36 years and has a daughter, also came out after meeting Heather.
The pair jumped on a Zoom call just two weeks after first talking and ended up chatting for hours – but couldn’t meet in person for another year.
It wasn’t until November 2021, when they finally met in London, that they realized they had a connection – and were gay.
“Sue had booked to go to a Star Trek convention in London,” Heather said.
“She came for a week, and the convention was at the end of that week.
“Sue is a photographer, so I took her to places where she could get good pictures.
“We went to Buckingham Palace and all the typical sites.”
After Sue returned to Florida, the couple spent the next 20 months flying back and forth across the Atlantic.
In October 2022, they finally came out to their families and friends.
“The toughest thing for me was coming out – I was terrified to tell my daughter,” Sue said.
“But when I told her I was gay, she looked at me and said, ‘Mom, I always knew you were.’
“It made me realize it was time to make the changes in our lives to be out.”
Heather also found coming out difficult:
“It was tricky for me – my family and friends had only ever known me dating men.
“I told my parents separately. I was a little more nervous about telling my dad.
“He said he already knew what was going on between us but asked why I didn’t tell him sooner.”
The couple took a trip to New York City in December 2022 to make their relationship official.
“It was on that trip that I proposed to Heather,” Sue said.
“We were at Summit One Vanderbilt, which is all glass, and it was nighttime in the city – it was beautiful.
“I found a quiet corner in the very busy room and proposed.”
Instead of having a big wedding, they decided to elope in Central Park in May 2023, with only two close friends as witnesses.
“The wedding itself was very small – we didn’t invite any family,” Heather said.
“We had spent so much time apart and accommodating other people, we didn’t want to worry about the logistics of getting everyone there.
“We wanted the wedding to be just about us – and it was a great day.”
In July 2023, Sue moved across the Atlantic to be with Heather in the UK.
“The biggest adjustment was moving from the ‘Sunshine State’ to rainy England,” Sue joked.
She had just retired and was looking forward to traveling in retirement.
“Flying to Europe and other destinations was much more expensive from Florida than from London, which was a big factor for me.
“Plus, the idea of living abroad had always been appealing to me.
“Heather has a six-year-old daughter and a career in mental health nursing, so it made more sense for me to move than for her.”
The couple says their age gap doesn’t impact their relationship or draw negative reactions from others.
Although Sue has occasionally been mistaken for Heather’s mom, they don’t mind explaining their relationship.
“Nobody has had an issue with it – even though it’s a pretty big age gap,” Heather said.
“When we first realized there was something between us, Sue was concerned about the gap.
“But I compared it to the age gap of Holland Taylor and Sarah Paulson.
“We know we have a time limit, and one day I’ll be on my own. But we both want to have whatever time we can together and make the most of it.”
Woman discovers she’s the spitting image of a 1909 painting
A woman was left shocked after a stranger pointed out that she was the doppelgänger of a 1909 painting.
Riley Madison Ladner, 22, had never heard of At the Dressing Table, a painting by Russian artist Zinaida Serebriakova.
But after receiving a message on TikTok, she was told about the uncanny resemblance.
At first, Riley brushed it off, but as more messages came in, she decided to look it up – only to be stunned by what she saw.
The painting depicts a young woman with loose, dark hair sitting at a dressing table – and the similarities between them were striking.
From her features and hair to a nightgown she already owned, the resemblance was so eerie that she decided to recreate the look.
Riley, a content creator from Bay St. Louis, Mississippi, USA, said: “It was very chilling – almost unnerving – because it was so similar.
“I thought it was so interesting and cool because I’m a painter myself.
“The painting looks so modern, so I was surprised to learn it was over 100 years old.
“When I showed my husband, he said, ‘Oh my gosh, you have a nightgown just like that!’
“So when I made the video, I intentionally wore it – but I already had it.”
The resemblance has sparked theories online, with some joking that she could be a reincarnation of the woman in the painting.
Riley is even considering taking a DNA test to see if she has any connection to the artist.
She said: “I’d love to do a DNA test just for fun.
“It would be so interesting to see if there’s any link – or if it’s just pure coincidence.”
“My husband trained in spray tanning to save me $1.6k-a-year”
A husband became a board-certified spray tanner after his wife asked him for a tanning subscription for Christmas.
Sarah Baus, 27, would get a spray tan twice a month — costing $1,600 a year.
Due to the high cost, Sarah asked her husband, Joseph Bass, 27, an engineer, for a membership package at the place where she gets her spray tans.
Instead, Joseph came up with the genius idea to pay $399 for a spray tan kit and took part in a one-hour course to become a board-certified spray tanner.
Despite being nervous at first, Sarah said that Joseph did a great job and she didn’t turn out too orange.
Sarah, a content creator from Charleston, South Carolina, said: “Joseph loves spending time with me; he is very into acts of service.
“He was very proud of the spray tan, especially the second one he did when I was going to an event.
“He thinks it is really funny; we laugh so much when we are doing it.
“Joseph is always looking for ways to do things like this; I don’t understand how he can get any better, but he does — it is alarming.”
Sarah would usually get a spray tan twice a month, spending $140 a month.
She realized the cost was adding up, so she asked her husband, Joseph, for a membership package for Christmas — but Joseph had other ideas.
“I have been pro-tanning for years. I was getting more and more spray tans for events and things,” Sarah said.
“I asked for a membership package for Christmas. I don’t know what inspired Joseph or how he found out about it, but he learned to become a spray tanner.”
Instead of buying Sarah the membership package, Joseph bought his own spray tanning kit for $399 and enrolled in a one-hour online course.
Sarah said: “He bought a kit from the National Spray Tan Certification Board and took an hour course.
“He has the whole kit; the first one was a bit of a test, but he did such a good job.
“I was a little nervous; the only thing I wasn’t sure about was the color — I was worried it might have go too orange.
“Once we got the first one out of the way, we were off to the races — it was great.”
Joseph, an engineer, from Charleston, South Carolina, added: I decided to buy the kit firstly because I knew it would be far cheaper over the long run than getting her a spray tan subscription.
“I also thought it would be a fun challenge to try out and would be a good bonding experience for both of us.”
Joseph has spray-tanned Sarah three times since he got the kit, and Sarah said he gets better each time.
“The second spray tan was for a huge event, I was like, ‘You have to remember this is for a special event,’ Sarah said.
“But I didn’t need to worry, it turned out great, and we had so much fun doing it.
“I have texted him this morning to book a spray tan for tonight.”
Joseph said: I love doing things for her so this is just another thing to add to my services list.
“Doing the first one was a little rough. Even though I took the training and read the book there were still a few things I needed practice with.
“Sarah said the first one looked good and the second one was even better so I hope it’ll come with practice.”
Bride planned wedding in 24 hours – so dying dad could walk her down the aisle
A bride planned her wedding in less than 24 hours – so her dying father could walk her down the aisle.
Maurice Haynes, 69, is currently receiving care at St. Giles Hospice in Whittington, Staffordshire, after being diagnosed with terminal tonsil cancer in October 2024.
His daughter, Hannah Haynes, 29, was desperate for him to be there for her upcoming wedding – knowing that he had always dreamed of walking her down the aisle.
So, she made sure his wish came true.
With the help of hospice staff, Hannah and her fiancé, Josh, also 29, organized their special day in less than 24 hours.
Caregivers transformed the hospice’s chapel into a beautiful wedding venue – complete with bunting and candles – and Hannah managed to find a wedding dress the morning of the ceremony.
Just hours later, on February 18, Maurice, from Cannock, Staffordshire, proudly walked his daughter down the aisle in an emotional moment captured on video.
Hannah said: “What St. Giles has done for my dad is unbelievable.
“He was unsure about coming to a hospice at first, but now that he’s here, he’s comfortable and happy in his environment.
“Having our wedding in a hospice wasn’t what we originally imagined, but having my dad there to walk me down the aisle – nothing else mattered. It didn’t matter where we were getting married, as long as he was there.”
Leon Ratcliffe, interim director of clinical services at St. Giles Hospice, shared how honored the staff was to be part of such a special moment.
“It was such an honor to help create a very special moment for Maurice, Hannah, and their family,” he said.
“Hannah was determined that her father would be part of her wedding day, and we were delighted to assist in making that happen.
“We wish Hannah and Joshua a long and happy marriage and thank them for allowing us to be a part of such a memorable occasion.”
“I’m best friends with my ex-husbands new wife – we’re so close we wax each other”
A mom is best friends with her ex-husband’s new wife and says they are so close they even help each other wax.
Haley Neill, 35, was married to Josh Braswell, 37, for six years when they realized they were better off as friends.
They have three children together – Brody, 15, Brylee, 13, and Brantlee, 9 – and were determined to be good co-parents.
When Morgan Braswell, 31, met Josh later that year, Haley was immediately open to welcoming a new woman into the family.
Morgan and Josh tied the knot eight years ago and now have three children together – Brooks, 7, Brady, 6, and Briar, 4.
Haley – who has since met her husband, Jason, 44 – felt even closer to Morgan when she became a mom and now considers her a best friend.
The two spend time together with their kids, say no topic is off-limits, and Morgan even helps wax Haley.
Strangers online often comment on how similar they look, saying Josh clearly has a “type.”
Haley, a brand manager at a bank from Magnolia, Arkansas, said: “It’s rare for us to go a day without seeing each other.
“I talk to her more than any of my friends.
“We have so much in common.
“She waxes me – that’s how comfortable we are.”
Morgan, a teacher, added: “We’ll talk about anything.
“We talk about problems – anything.
“People flip out because we look alike.
“It makes it fun – everyone says he has a type.”
When Haley and Josh, a loader at a refinery, separated in June 2014, she was determined to create a “healthy blended family” after coming from a split family herself.
Haley said: “That was my main motivation.
“My parents won’t be in the same room.
“We were meant to be friends.
“We got pregnant and rushed to get married.
“When we separated, we became friends again.”
Morgan met Josh in November 2014 through Snapchat – she was friends with his cousin, and her name popped up on his account.
Morgan said: “He Snapchatted me and thought I was cute.
“After the first time I hung out with him, I left for Disneyland, and he said, ‘We’re going to take the kids there one day.'”
Morgan and Josh quickly hit it off, and Haley was immediately welcoming.
Haley said: “It wasn’t like I still wanted the marriage.
“She didn’t split up our marriage.
“We never disliked each other.”
Morgan added: “I was the other woman in her kids’ lives. I give her props. I took her youngest daughter to get her ears pierced, and she didn’t care.
“Stepmoms dream of this.”
The two became even closer five years ago when Morgan’s eldest, Brooks, was a toddler.
Haley said: “When she became a mom, there was something different.
“I feel like she understood me.
“We had this connection. I started to be more comfortable with her.
“It was a really cool experience for me – my kids had a sibling. It was amazing to see how much my kids loved their sibling.”
Now, the friends hang out most days – living just 0.8 miles apart. They work out together, go to the pool, and take their kids on vacations.
They even have the same style and interests.
Morgan said: “We have the same style. We’ve shown up in the same clothes before.
“We’re both a little crazy.
“We make a good match – Haley is a people pleaser, and I’m the one who will say the things she won’t.”
Haley met her husband, Jason, a salesman, in September 2018, and the whole family often spends time together, attending ball games and other events.
The blended family doesn’t spend Christmas together since Haley’s family is spread out across the country, but they always see each other during the holiday season.
Haley said: “I wanted the kids to have a healthy blended family.
“I wanted them to see that you can all get along.
“Years ago, I was on the phone with Morgan, and Brody asked, ‘Are you best friends?’
“At the time, I said, ‘No, we’re just friends.’ But now, we’re best friends.”
Now, the two say they each feel like a “bonus mom” to each other’s kids.
Morgan said: “I feel like I’m a bonus mom to Haley’s kids.”
Haley added: “Morgan is like a sister.
“Josh and I never got along well – we were just waiting for Morgan.”
