Parents from Great Cornard, near Sudbury, tell how their daughter Teigan Bayliss inspired a campaign to warn of virus danger and raise funds
Teigan Bayliss was a tiny baby when meningitis almost killed her. She developed the deadly disease after being infected with the herpes virus by a kiss from someone with a cold sore.
But as she fought for her life in hospital one thing helped give her parents Tony and Beckie the strength to carry on … her smile.
Teigan is now 12. She has grown into a bright, intelligent, happy and kind-hearted girl with the same interests as any other almost-teenager.
But the illness left her with quadriplegic cerebral palsy. She uses a wheelchair, can only stand with a frame, and has endured a succession of operations to help ease her condition.
She also needs extra nutrition delivered through a tube into her stomach.
And yet that dazzling smile is not only still there - accompanied now by a cheeky sense of humour - it has inspired a charity launched in her name.
TeiganSmile was initially a venture set up by her parents to warn of the terrible possible consequences of accidentally passing on the virus to a baby, and to raise funds to give their daughter better quality of life.
In April this year it was registered as a charity - which means it can now help other children with special needs like Teigan’s by giving out grants.
Raising awareness of the dangers of the herpes virus, which may not have any outward signs, is still a key aim.
Gaining charity status was a huge milestone for the couple who run the Maldon Grey pub in Great Cornard near Sudbury, and previously lived in the Bury St Edmunds area. They will now concentrate on fundraising while the charity is managed by trustees.
“The name TeiganSmile came from when Teigan was in hospital,” said Tony. “We were going through a bad time in our lives and without her smiles it would have been even tougher.
“It kept us going,” said Beckie. “She’s a little fighter. She was in hospital for three weeks.”
Teigan, who has three grown-up half-brothers, Scott, Toby and Phillip, and a sister Tracey, who is 10, was two weeks old when meningitis struck.
“She wasn’t waking up and was really lethargic, and her arms were jerking. A friend drove us to the hospital. Your gut kicks in. We knew we needed to get her to hospital.
“At the hospital they said not to worry about the jerking, it was neurological. But again our gut kicked in. If we had decided to go home she might not have made it and we insisted on seeing a doctor. By that time she was fitting.”
Tony, his voice breaking with emotion, says: “It was 12 years ago but even now talking about it chokes me up.
“It became such a big thing to tell people this can happen, because people didn’t know.”
Babies less than four weeks old are at the biggest risk from meningitis triggered by the herpes virus.
Lisa Howes, lead trustee of TeiganSmile, said: “The slightest touch could transfer it across. Seventy percent of people carry the virus, but it may never produce a cold sore. The safest thing is simply not to touch a baby.”
Teigan was diagnosed with quadriplegic cerebral palsy, which affects all four limbs, at nine months. Less than a year later she was back in hospital. “I breast fed her for 17 months but she wasn’t putting on enough weight,” said Beckie.
“She was admitted to Addenbrooke’s Hospital where she had a gastrostromy - a feeding tube directly into her stomach.”
Teigan still has the tube button so that she can be given extra calories. “Because of the cerebral palsy she uses five times more energy than other children the same age, so we have to boost her nutrition intake overnight … although she does also have a very healthy appetite.”
She is still having surgery to help her cope with her condition, and was due to go into hospital this week to have metalwork removed from her hip following an crucial operation last August designed to help her to move more freely.
The surgery was close to a major blood vessel and Tony admits he struggled with the knowledge of the risks involved.
They started TeiganSmile a year after the cerebral palsy diagnosis. “It was knowing what we wanted to do and getting it out there,” Tony says. “I started it because I’m a dad but even now we’re such a small voice - it’s such a big thing.
“Teigan loves the charity. We have seen such a big change in her, particularly since coming to this pub, it has done her the world of good.”
Lisa adds: “There is genuine care for her in this community. She talks to everybody, chats to customers.”
Teigan’s condition means she cannot learn as quickly as other children. If people find it difficult to understand what she says she will write it on her iPad. She goes to Hillside Special School in Sudbury, which Beckie says has been amazing.
“There was only so far we could go when we weren’t a registered charity,” said Tony. “One of my worst fears is that a child will live a certain life because their parents can’t afford a certain piece of equipment.”
An example is Billy boots, specialist orthopaedic footwear, that for Teigan work like a splint to try and correct the position of her leg and help her to stand with her frame.
“Now we are a charity people can apply to us for a grant. All the finances come through me,” said Lisa, an ex-teacher who is also the TeiganSmile treasurer.
“If we can raise enough funds we could supply families with what they need. Simple things like the boots. It’s hard when you have a child who needs so much support.”
Since April the charity has raised £1,600, including the proceeds of a charity football match in early July.
“Now our biggest focus is to get ourselves known and recognised.” said Lisa who became friends with the family when they moved into the pub. Tony says she has been a godsend.
Simon Kindleysides, who uses a wheelchair and made London Marathon history by being the first man to do the race in a robotic suit, is also a trustee. He has been friends with Tony and Beckie since seeing their story on social media a few years ago.
Maldon Grey chef Martin Ingram, and long-time supporter Chris Dixon complete the team.
The cause has already attracted high profile supporters including comedian Rosie Jones who herself has cerebral palsy. “We are hoping she might become an ambassador for us,” said Lisa. “She is someone who really understands what Teigan has gone through.
“To get a link with her reinforces that Teigan may be in a wheelchair but she has the same humour as any other 12 year-old. She is fun and laughs and says things she shouldn’t - she’s just a normal kid.
Actors Will Mellor, and Ralf Little who currently stars in the hugely successful TV series Death in Paradise, are among other supporters.
Fun and fundraising will be the order of the day at a series of events planned for TeiganSmile.
Friday, July 28: Fun day with Robbie Willians and Gary Barlow tribute act. Cornard United Football Club, 12 to 6pm.
Sunday August 13: Family fun day at the Maldon Grey, Great Cornard. Proceeds will be shared between TeiganSmile and Macmillan Cancer Support.
August 26: Teigyfest – fundraising music festival at the Maldon Grey, Great Cornard.
For more information go to the website teigansmile.co.uk
