Please support my wife Charlotte Connolly, in her battle to receive a life saving drug called Soliris (Eculiuzab), which has been recommended to her in her fight against a very rare disease called Degos Disease.

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 the drug Soliris, has been used in certain cases, predominantly in the United States, and has been of some benefit to the recipients of this treatment. The drug is expensive at approximately €430,000 per annum, and to date St. James's Hospital and the Health Service Executive have not given the go ahead to give Charlotte this life-saving drug. Charlotte is seeking the chance to see does this treatment work for her in her case. I believe that it is morally wrong and unjust to deny somebody a life-saving treatment and I ask you to support this petition and to share it with as many people as you possibly can, so that we can get Charlotte the treatment that she so badly requires. 

Time is not on our side in this regard so please help in any way that you can.

Thank You.