Leicester Hospitals Cystic Fibrosis Childrens Dept
Donation protected
As many of you know, our daughter Amelie-Rose was diagnosed with Cystic Fibrosis at 12 days old.
From that day like any parent we have done everything possible to keep her as healthy as we possibly can during her early years.
From past fundraisers we have successfully raised a large sum for the Cystic Fibrosis Trust and also raised enough to supply an interactive floor projector for all at Leicester Hospitals for to benefit all children staying at the hospital.
This time I would like to raise money directly to the Children's Cystic Fibrosis Department at Leicester. This will allow all donations to be directly visible and helping individual lives and health of Children with CF.
I am running a half marathon on 13th June at Cheltenham Racecourse, giving myself just 10 weeks notice. I've never run a distance this far and after having two ankle reconstructions it will be a big achievement for me to complete this.
Thank you for all of your donations in advance.
Love Luke, Kylie & Amelie-Rose x
Cystic Fibrosis is a genetic condition affecting around 10,800 people in the UK. You are born with cystic fibrosis and cannot catch it later in life. There are many Cystic Fibrosis mutations, Amelie was diagnosed with the Double Delta F508 mutation and is also pancreas insufficient. This means as well as needing physiotherapy every day, she needs enzymes with any fat she eats to break her food down as well as various salt and vitamin supplements. She also takes Orkambi, the first pipeline drug from Vertex, which we are hopeful will extend her life expectancy long term (currently 44) and as new drugs become available for her we hope that she will be able to live a long and healthy life!
Unfortunately though many children and teens with CF need additional equipment and help to maintain this quality of life through school days & for this reason we want to raise as much as possible for the Cystic Fibrosis Department at Leicester so we can see a direct impact to where our money goes. We have asked the Team to collate a list of items that will help support at a local level.
From that day like any parent we have done everything possible to keep her as healthy as we possibly can during her early years.
From past fundraisers we have successfully raised a large sum for the Cystic Fibrosis Trust and also raised enough to supply an interactive floor projector for all at Leicester Hospitals for to benefit all children staying at the hospital.
This time I would like to raise money directly to the Children's Cystic Fibrosis Department at Leicester. This will allow all donations to be directly visible and helping individual lives and health of Children with CF.
I am running a half marathon on 13th June at Cheltenham Racecourse, giving myself just 10 weeks notice. I've never run a distance this far and after having two ankle reconstructions it will be a big achievement for me to complete this.
Thank you for all of your donations in advance.
Love Luke, Kylie & Amelie-Rose x
Cystic Fibrosis is a genetic condition affecting around 10,800 people in the UK. You are born with cystic fibrosis and cannot catch it later in life. There are many Cystic Fibrosis mutations, Amelie was diagnosed with the Double Delta F508 mutation and is also pancreas insufficient. This means as well as needing physiotherapy every day, she needs enzymes with any fat she eats to break her food down as well as various salt and vitamin supplements. She also takes Orkambi, the first pipeline drug from Vertex, which we are hopeful will extend her life expectancy long term (currently 44) and as new drugs become available for her we hope that she will be able to live a long and healthy life!
Unfortunately though many children and teens with CF need additional equipment and help to maintain this quality of life through school days & for this reason we want to raise as much as possible for the Cystic Fibrosis Department at Leicester so we can see a direct impact to where our money goes. We have asked the Team to collate a list of items that will help support at a local level.
Organizer
Luke Sullivan
Organizer
England