Over the Christmas holidays, 2013, Isabelle (better known as Baby) was diagnosed with the extremely rare and life-threatening blood disease Atypical Hemolytic Uremic Syndrome, or aHUS.
In Isabelle's case, this disease has occurred idiopathically, causing her blood to create millions of tiny clots and shutting down her kidneys. Luckily, she was given 4 doses of the life-saving drug eculizumab. While taking these 4 doses (over the last 4 weeks), Isabelle's aHUS has been completely de-activated!
However, the catch is this: due to the nature of this disease and its rareness, this drug has had little testing and therefore has not been technically "proven" to work for aHUS. It is working for Isabelle perfectly, but she will need it for the rest of her life; once she stops taking it, her disease will re-activate. Unfortunately, the eculizumab costs around $600 000 per year, something we simply can't afford.
We, Isabelle's family, are in the process of lobbying the government to support Isabelle and provide her with this treatment. Eculizumab's recognition by the government as a necessary, life-saving drug is up for review in March - which means, provided that the government agrees, Isabelle is unlikely to receive any more eculizumab until the end of July.
In the meantime, Isabelle will likely have to undergo both dialysis and plasma transfusions three times a week. These will not de-activate aHUS, but they will keep her alive. Further damage will be done to her kidneys (which are currently in shock and functioning at less than 10%) and her quality of life will be low.
We are trying to raise some money to buy the next 12 doses of the eculizumab, one a fortnight until the end of July, to prevent her from suffering. These 12 doses altogether will cost $274 000. Please, anything you can give would be so much appreciated.
Two little aHUS angels, Baby Riss and Ashley Gray
Follow the Facebook page for updates and events! www.facebook.com/savebbriss
DonationsSee top donations
- Chloe Sugden
- Matt Connolly
- Sinéad Ní Chatháin
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more