Get involved: send your pictures, video, news and views by texting TANEWS to 80360, or email
Parents start fundraising campaign after baby son was diagnosed with cystic fibrosis
A family who are fundraising to help pioneer a cure for cystic fibrosis after their seven-month-old son was diagnosed with the life-limiting condition have raised £4,500.
Joe Lyons and Danielle Bannister, both 21, of Wyke, discovered their first child, Jacob, had the genetic illness after a month of tests and operations when he became sick at just a few days old.
They decided to raise money for the Cystic Fibrosis Trust, which is researching a new gene therapy which could raise the life expectancy of those with the chronic condition from 37 to 60.
A fundraising evening at The White Swan in Wibsey in August raised the cash with £3,200 going to the Cystic Fibrosis Trust and £1,300 for the Cystic Fibrosis ward at Leeds General Infirmary. Now the couple want to raise £7,000 to buy their son a special vest which will help move the excess mucus off his chest and clear his airways.
The fundraising day included a raffle, auction, tombola, stalls, barbecue, live music, sponsored waxing and head shaving, and football shootouts.
Mr Lyons said: “After spending many weeks in hospital with Jacob, when we finally got discharged we decided that we wanted to help two charities. The first being the Cystic Fibrosis Trust to try help find a cure for this condition. Also the Cystic Fibrosis ward in Leeds General Infirmary where Jacob was treated and will regularly attend for his entire life.
“We were extremely touched and honoured to hear that The White Swan in Wibsey wanted to help us raise money for these causes.
“After many weeks of planning and organising we held the fundraising event.
“The Cystic Fibrosis Trust use the money to help support greater investment in research projects and train clinicians to help support people with cystic fibrosis. We decided to raise money for the ward as people with the condition require rigorous treatment everyday including physiotherapy.
“The ward have recently opened a new outdoor area for children to do physiotherapy and with the help of the physiotherapist we have purchased some equipment for the outdoor centre.
“We have also purchased some equipment for the play therapist to use on the ward to help keep the children entertained and educated during their stay in hospital to make it as pleasant as possible. When children are admitted they are kept in isolation due to cross infection reasons and stay for a two-week course of IV antibiotics.
“We would like to say a massive thank you to The White Swan for allowing us this opportunity and helping us host the event and the public for backing us and showing such amazing support.
“For the future we have decided that we would like to continue raising money for the Cystic Fibrosis Trust due to the fantastic support we received but our goal at the moment is to focus on our son.
“A physiotherapy vest, known as a high frequency chest wall oscillation is something that we are currently researching for Jacob. This involves an electric air compressor that connects to an inflatable jacket to vibrate the chest and help shift the excess mucus damaging the lungs.
“This would provide an alternative treatment choice for Jacob when he does his daily physiotherapy regime. However, they cost in excess of £7,000, money we simply do not have.”