Help Charlotte fight Degos Disease
Donation protected
Charlotte is a 47 year old Mum from Mullingar, Co. Westmeath, Ireland. Charlotte was diagnosed with Systemic Degos Disease in early 2015 after a number of years of tests. Degos Disease is a disease of the small blood vessels, and is extremely rare. Charlotte is the only known case in Ireland at the present time. There have been as few as 150 known cases worldwide since it was first discovered in the 1940's and only approximately 40 people alive in the World living with the disease. There is a very high mortality rate associated with this disease.
However, there is a potentially life saving and experimental drug called Soliris (FDA Approved) which has been used in cases similar to Charlotte (predominantly in the United States). This has resulted in significant benefits for patients and in some cases, has proven to be life saving. The problems are that the drug is experimental and expensive at approximately €430,000 per annum. The Irish Authorities have not authorised the treatment due primarily to its cost. Our priority in establishing The Charlotte Connolly Trust is to raise funds to trial this drug on Charlotte to see if the treatment will work and potentially safe her life. We would ask you to support us so that we can get Charlotte the treatment that she so badly requires. There is no guarantee that the drug will work in her case but we feel that we must do all that we can in order to see if it is life saving. Should the drug be ultimately unsuccessful, then we will have tried our best and all monies raised will go towards her continuing care and benefit to ensure her quality of life is maintained to as high a level as possible.
Time is not on our side, as Charlotte grows weaker with every passing day and we would urge you to donate what you can and give Charlotte the chance to continue her life in the company of her family and friends who love her so much.
We thank you so much for your time in reading this plea and for any donation that you may make.
However, there is a potentially life saving and experimental drug called Soliris (FDA Approved) which has been used in cases similar to Charlotte (predominantly in the United States). This has resulted in significant benefits for patients and in some cases, has proven to be life saving. The problems are that the drug is experimental and expensive at approximately €430,000 per annum. The Irish Authorities have not authorised the treatment due primarily to its cost. Our priority in establishing The Charlotte Connolly Trust is to raise funds to trial this drug on Charlotte to see if the treatment will work and potentially safe her life. We would ask you to support us so that we can get Charlotte the treatment that she so badly requires. There is no guarantee that the drug will work in her case but we feel that we must do all that we can in order to see if it is life saving. Should the drug be ultimately unsuccessful, then we will have tried our best and all monies raised will go towards her continuing care and benefit to ensure her quality of life is maintained to as high a level as possible.
Time is not on our side, as Charlotte grows weaker with every passing day and we would urge you to donate what you can and give Charlotte the chance to continue her life in the company of her family and friends who love her so much.
We thank you so much for your time in reading this plea and for any donation that you may make.
Organizer
Declan Connolly
Organizer
