Samantha and Tony are getting married in June with Vinnie as pageboy
Samantha before she lost her sight through misdiagnosis
Standing proudly holding her baby son with her handsome fiance Tony at her side, Samantha Goddard looks like she has the perfect family life.
And in many ways she has. Apart from one thing: all three of them are blind .
Samantha is severely sight impaired after a reaction to anti-flu drugs. Tony has an inherited condition and little Vinnie recently lost his sight from the effects of two brain tumours.
But in July, the couple will marry with their 22-month-old son as their page boy. And Samantha couldn’t be happier.
“After everything that has happened, I never thought I would ever have a child, let alone get married,” she says. “But my dreams really are coming true.”
Samantha was just 18 and studying travel and tourism when she was wrongly diagnosed with swine flu by NHS Direct in December 2009.
She was prescribed the anti-viral drug Tamiflu. But she collapsed covered in blisters and developed potentially fatal toxic epidermal necrolysis which left her hooked up to a life support machine and fighting for her life.
Samantha survived and was later awarded damages. But internal damage and scarring meant it was highly unlikely she would have children – and the damage to her corneas left her sight severely impaired and registered blind.
She became a residential pupil at the Royal National School for the Blind in Hereford. There she regained some of her independence by learning Braille and how to get around with a cane.
She also started a relationship with a fellow pupil. And, miraculously, in November 2013 she found out she was pregnant.
“When I got over the shock I was really excited,” Samantha, 25, explains. “After everything I’d been through I never thought I would be lucky enough to be a mum.”
She subsequently split with her boyfriend, but on June 28, 2014, her mother, Debbie, and sister, Charley, were by her side in hospital when Vinnie was born. “When I held him for the first time it was amazing,” Samantha recalls.
“They placed him on my chest. I felt his skin against mine and all I could see was his little head and his big eyes looking up at me. I couldn’t believe that he’d been inside me, and I felt so much love I just couldn’t stop crying.”
As the pair settled into her two-bed adapted house, she got used to being a single mum. But soon Samantha got together with an old friend from the Royal National School for the Blind, Tony Chandler, 46.
“We had stayed in touch since college,” explains Samantha. “And there was always an attraction between us. There’s a 22-year age gap between us which Tony thought would put me off, but it didn’t.
“I just wanted to wait until I’d had the baby before making any big decisions. Tony came to
visit when Vinnie was 17 days old and I didn’t let him leave.”
Tony became visually impaired eight years ago because of a condition called Leber’s Hereditary Optic Neuropathy.
He took on Vinnie as his own son and they became a proper family.
“Tony was brilliant,” says Samantha. “He’d get up in the night to do Vinnie’s feeds so I could sleep.”
But at about three months old, Vinnie stopped taking milk from his bottle and his eyes started shaking.
Worried, Samantha, of Bicester, took him to the doctor and was referred to the John Radcliffe Hospital in Oxford for an MRI scan. It revealed a mass on his brain. “They didn’t know what it was at first,” explains Samantha.
“So they did a biopsy and more tests and discovered that he had a low grade glioma.
“It basically meant that he had two benign tumours on his brain and lots of little ones at the top of his spine.
“Although it wasn’t cancer , it was more aggressive because they were growing fast.”
Devastated, Samantha broke down in tears and walked out of the hospital.
“I felt like my whole world had caved in,” she recalls. “I just kept thinking why Vinnie?”
His condition wasn’t genetic, and nothing to do with Samantha’s health issues, just terrible luck. Samantha and Tony moved into a room at the hospital and Vinnie began chemotherapy through a Hickman line. The chemotherapy hit him hard.
“He was really sick and couldn’t even keep milk down,” remembers Samantha. “Vinnie needed a nasal NG tube to pump milk into his stomach. “We spent day after day by his hospital cot, talking to him and playing his favourite Ed Sheeran CD.”
Thankfully, the treatment seemed to be working and the tumours started shrinking. Two and a half months later Vinnie came out of hospital in time for Christmas. He still had his Hickman line and feeding tube, and had to go back for weekly chemo.
Samantha’s mum and stepdad, Bart, moved in for a month to help out, and a community nurse came in regularly to change Vinnie’s tubes. Otherwise, Samantha and Tony managed on their own.
But when Vinnie was about 10 months old they noticed he was feeling around for toys in his cot rather than looking for them. Tests were carried out and doctors discovered that his sight had indeed been damaged.
“They knew that the tumours had been pressing on the brain and the optic nerves so it’s possible that caused it,” explains Samantha.
Vinnie was registered sight impaired/blind but, because of how young he was, doctors said they would need to wait until he could talk to discover more about exactly what he could and couldn’t see. “It was really upsetting,” says Sam.
“It’s sad to think life is going to be a struggle for Vinnie, but it’s better that he’s lost his sight at this age rather than go through what Tony and I did and lose it later.
“Because he’s so young he’ll adapt better.”
The family invested in lots of sensory toys to stimulate Vinnie, and he slowly got used to feeling his way around the living room to his bag of toys.
On Christmas morning 2015, Samantha was in for a surprise when Tony presented her with a beautiful white gold engagement ring and asked her to marry him .
“I was so happy and overwhelmed,” beams Samantha. “After losing my sight my confidence had plummeted and I never dreamt that anyone would want to marry me.”
Overjoyed Samantha couldn’t wait to start planning the big day. The couple have set the date at their local register office on July 23. And Samantha wasted no time going dress shopping.
At the first shop, accompanied by her mum and sister, she found her dream fishtail dress and bought a little black suit for their pageboy and guest of honour, Vinnie.
And recently the family got even more good news when doctors told them that Vinnie’s tumours have shrunk enough for his chemotherapy to finish in May.
“Finally, after nearly two years of treatment, Vinnie can be a normal little boy,” says Samantha proudly.
“He’ll need a scan every six months for the first 2-3 years, but we’ll be free to get on with life.”
With all three of them registered as sight impaired/ blind, there are undoubtedly going to be challenges ahead.
But Samantha is confident that, with the support of her husband-to-be, they’ll tackle them together.
“Tony’s visual impairment means he can still see small things, so he takes care of Vinnie’s medication,” explains Samantha. “I can see outlines and colours. So we complement each other perfectly.
“We’ve already changed Vinnie’s surname by deed poll to Chandler. Now I can’t wait until the big day comes and I can become the third Chandler in the household.”
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