Radio and TV presenter Toby Anstis has a new BFF in the shape of vivacious toddler Tilly Kay who has cystic fibrosis.
Toby met Tilly at a gathering to raise awareness of cystic fibrosis and to promote the ‘Breathe With Me’ Strawfie Challenge.
Tilly was the guest of honour for the afternoon and the only person with cystic fibrosis able to attend the event due to cross infection issues. The bouncy toddler had the time of her life bonding with Heart FM DJ Toby Anstis, constantly telling her parents, “Toby is my friend.”
Turning three in June, Tilly, and her parents Sam and Henry Kay, were able to demonstrate to the gathering one particular aspect of how cystic fibrosis impacts the lives of those affected. Tilly was very partial to the chocolate brownies from the buffet but, as with most affected by the disease, she had to take Creon (enzymes) before she tucked into the food, as she cannot absorb fats without them. As she is too young to swallow the capsules, each time she wanted a snack, enzymes had to be sprinkled on a teaspoon of apple puree before she could eat.
“I had no idea until today, that cystic fibrosis affected the pancreas as well as the lungs” said Toby. “Little Tilly is adorable and I’m delighted to be able to help raise awareness about cystic fibrosis.”
All the guests at the event watched a video showing the many ways that cystic fibrosis impacts the lives of those affected. They each then tried the Strawfie Challenge for themselves, where they tried breathing through a straw for 60 seconds, while pinching their nose, to experience for a short time the sensation of restricted breathing experienced by many with cystic fibrosis.
Cystic Fibrosis Week runs from 9th -15th May and people are being asked to post their Strawfies online and then nominate friends to take part. All donations will benefit the Cystic Fibrosis Trust.
Larissa Hirst, who won the Miss Brainy Beauty 2015 title in the Miss England contest, was particularly affected by the experience at the event. “I had a school friend who died from cystic fibrosis” said Larissa. “This brings back all those memories about her.”
Toby took his Strawfie with the Kay family, holding a sign that said ‘Free prescriptions for cystic fibrosis – sign the petition’. This alludes to the fact that people with cystic fibrosis are not entitled to free prescriptions, despite the fact that cystic fibrosis is a progressive disease and the amount of medication needed inevitably increases in adulthood. This is because the exempt list was drawn up over 40 years ago, in 1968, when most children with cystic fibrosis did not live until adulthood.
50% of people with cystic fibrosis live to the age of 41. 50 years ago they were unlikely to live beyond the age of 5.
Sam Kay said “When Tilly reaches 16 she will have to pay for all of her presciptions unless the exempt list is reviewed. Obviously this is something that we would like to see changed, as it puts an additional financial strain on any person with CF, some of whom may actually be too ill to hold down full-time employment.”
Full details of how to participate in the Strawfie Challenge are available at www.breathewithme.info