Bourne youngster Tallulah Tyler inspires her uncle Ricky Tyler to cycle 270 miles to raise money for the Prader Willi Syndrome Association
With Easter approaching many children are looking forward to a weekend of egg hunts and chocolatey goodies but there will be no such treats for this little girl.
Tallulah Tyler has never tried a chocolate bar or packet of crisps in a bid to curb the symptoms of her rare condition.
The seven-year-old has Prader-Willi Syndrome which affects many aspects of her every day life.
A constant hunger is one of the most common symptoms and her diet has been strictly controlled since she was diagnosed in an effort to stop her developing a taste for unhealthy foods.
She also suffers learning difficulties, behavioural problems, weak muscles and developmental delay.
Mum Tammy, of Great Northern Gardens, Bourne, said: “Despite everything she’s a happy little girl.
“No one wants their child to struggle but this is who she is. I’m strong-willed and will make sure she is ok, but if I could take it away from her I would do it in a heartbeat.”
Tallulah was born nine weeks early and spent 12 weeks in intensive care at Peterborough City Hospital.
Doctors noticed early on that her development was delayed and soon diagnosed the chromosome disorder which affects one in 100,000 people.
The genetic fault is thought to affect the part of the brain which produces hormones and controls appetite and growth.
Tallulah has a strict routine and diet to help manage the symptoms.
Having attended a mainstream nursery and school for two years, she now attends The Willoughby School in Bourne.
Tammy, 45, said: “She’s been getting on really well there as they understand her triggers.
“She will never take GCSEs or anything like that, but it’s about learning life skills and being able to look after herself.
“It gives her a little bit of independence.”
Tallulah has a three-year-old brother Parker who also has to fit in with the family’s strict routine.
Tammy, who works part time as a hair stylist, said: “Our life revolves around food and she has to go to bed at 6pm to get enough sleep to function the next day.
“Even something as simple as going to the park is tough and she doesn’t like busy places.”
The Prader-Willi Syndrome Association UK offers support to families and funds research into the condition.
Tallulah’s uncle Ricky Tyler is taking on a 270-mile bike ride from Paris to Peterborough to raise money for the charity.
He said: “I’ve always been close to Tallulah right from when she was born.
“My sister does brilliantly.
"It’s such a hard thing to manage and I sometimes struggle when I don’t know what she wants or how to help.
“The charity is really good and this is my way of giving something back and making it a bit easier for my sister to approach them in the future if she needs help.”
Ricky, who lives in Peterborough, will travel to France with three friends at the end of August to take on the challenge.
He is already a keen cyclist and rides up to 7,000 miles a year but admits this challenge will be a tough one.
He said: “Although we are all keen cyclists, this ride,over three days will be physically and mentally challenging."
The group will ride 118 miles from Paris to Dieppe on day one.After catching the ferry they will travel from Newhaven to London on day two and then to Peterborough on day three to complete the challenge.
They money raised will go towards research into Prader-Willi Syndome and support for families of those who have it.
To sponsor the team visit www.justgiving.com/fundraising/paris2peterborough2019
To find out more about the charity visit www.pwsa.co.uk
More by this authorAndrea Scholes