Darcey Hope
Donation protected
Darcey Hope is 1 years old and was born with a rare genetic disease called Cystic Fibrosis (CF). Darcey Hope’s start in life was tough, as a result of CF she had a tummy blockage resulting in a four hour operation, followed by Sepsis and suspected Meningitis. Her first month of life was spent in hospital.

CF is a life limiting disease. The current life expectancy is 37 years. The disease causes sticky mucus that affects mostly the lungs but can also affect other organs such as the pancreas, liver, kidneys and intestine. Over time lung function deteriorates as a result of infections with death been likened to drowning from the inside.
We want Darcey Hope to live as long as possible and so have decided to fundraise to try to keep her happy little soul here for as long as possible.

There is currently a drug available called Orkambi for the genetic type that Darcey Hope has however the NHS do not fund it in England. It costs £104,000 a year to obtain privately. From the age of 2 Orkambi could be taken, evidence provided by the trials done indicate that it can maintain lung function meaning life expectancy is longer, less time is spent in hospital and quality of life is improved.
Darcey Hope has already had a two week stay in hospital for intravenous antibiotics for a bacterial lung infection and recently has gone up to taking as many as 11 drugs a day at numerous times for a wheeze that she came home from hospital with.

We want Darcey Hope to spend as much of her time at home with us as a family, to enjoy growing up with her sister and not to all be separated by hospital stays. Most importantly as mentioned above we want her to live as long as possible with the best quality of life she can possibly have.

There is currently a petition campaigning for Orkambi that has reached 100k so should hopefully be debated in parliament and talks are underway between NHS, NICE and Vertex (Drug Company). This has however gone on for some years. Time is not something we have a lot of so we are going to try to raise the funds by whatever means we can e.g. events, activities etc and asking for donations, in the 11 months we have.
So please if you wish to fundraise or donate to help Darcey and give her the Hope, that her fitting middle name mentions, please do, we would be eternally grateful as would Darcey Hope.

NB. Should Orkambi become available on the NHS in this time any funds will be put towards improving Darcey Hope’s life in any way we can. High Frequency Chest Wall Oscillation Vests to help with her daily physiotherapy are available that cost £8,000 and other physiotherapy aids as an alternative and other funds can be donated to the Cystic Fibrosis Trust to improve the lives of others with CF.
CF is a life limiting disease. The current life expectancy is 37 years. The disease causes sticky mucus that affects mostly the lungs but can also affect other organs such as the pancreas, liver, kidneys and intestine. Over time lung function deteriorates as a result of infections with death been likened to drowning from the inside.
We want Darcey Hope to live as long as possible and so have decided to fundraise to try to keep her happy little soul here for as long as possible.
There is currently a drug available called Orkambi for the genetic type that Darcey Hope has however the NHS do not fund it in England. It costs £104,000 a year to obtain privately. From the age of 2 Orkambi could be taken, evidence provided by the trials done indicate that it can maintain lung function meaning life expectancy is longer, less time is spent in hospital and quality of life is improved.
Darcey Hope has already had a two week stay in hospital for intravenous antibiotics for a bacterial lung infection and recently has gone up to taking as many as 11 drugs a day at numerous times for a wheeze that she came home from hospital with.
We want Darcey Hope to spend as much of her time at home with us as a family, to enjoy growing up with her sister and not to all be separated by hospital stays. Most importantly as mentioned above we want her to live as long as possible with the best quality of life she can possibly have.
There is currently a petition campaigning for Orkambi that has reached 100k so should hopefully be debated in parliament and talks are underway between NHS, NICE and Vertex (Drug Company). This has however gone on for some years. Time is not something we have a lot of so we are going to try to raise the funds by whatever means we can e.g. events, activities etc and asking for donations, in the 11 months we have.
So please if you wish to fundraise or donate to help Darcey and give her the Hope, that her fitting middle name mentions, please do, we would be eternally grateful as would Darcey Hope.
NB. Should Orkambi become available on the NHS in this time any funds will be put towards improving Darcey Hope’s life in any way we can. High Frequency Chest Wall Oscillation Vests to help with her daily physiotherapy are available that cost £8,000 and other physiotherapy aids as an alternative and other funds can be donated to the Cystic Fibrosis Trust to improve the lives of others with CF.
Organizer
Kerry Louise Bell
Organizer