In which I plead for your money
Ok. So it's that time again. My birthday is less than 2 weeks away and you know what that means. Or you don't because you weren't here last year. So I'll refresh your memory.
In 1996 my brother and I were diagnosed with a genetic disorder called Psuedoxanthoma Elasticum. It is a disease that affects the processes of the liver causing build ups of calcium in our skin, digestive systems, eyes, and cardiovascular systems. At it's very worst it can cause vision loss from bleeding into our eyes or death from gastrointestinal bleeding.
Currently my brother and I are very healthy and don't suffer these ill effects. But it's all a matter of time. When we were diagnosed (13 years ago now), my parents were told we'd probably die at age 11 or 12. But here I am turning 22.
So the point of all that is that every year for my birthday I hold a little charity giving thing on a site called http://www.firstgiving.com. It's a very cool site that allows you to set up a page for an event and have all the donations go towards the charity of your choice.
My mother (being a proactive little bee) started a research and support advocacy group almost immediately after we were diagnosed called PXE International. And so, I'd love for you to go to my charity giving page and give as much or as little as you can. The organization runs solely off charitable donations.
Last year we raised over $2375 with your help. Hoping to top that this year. *fingers crossed*
I know that everyone is hurting and attempting to save money for various things in the future but even 10 dollars would go a long way towards helping these generous and hardworking people fight a disease that I am very personally invested in.
Thank you so much even if you just read this and can't give right now. It's so important to just be aware. <3
(If you donate please PM me your address and I'll send you a very cool personalized thank you note)
In 1996 my brother and I were diagnosed with a genetic disorder called Psuedoxanthoma Elasticum. It is a disease that affects the processes of the liver causing build ups of calcium in our skin, digestive systems, eyes, and cardiovascular systems. At it's very worst it can cause vision loss from bleeding into our eyes or death from gastrointestinal bleeding.
Currently my brother and I are very healthy and don't suffer these ill effects. But it's all a matter of time. When we were diagnosed (13 years ago now), my parents were told we'd probably die at age 11 or 12. But here I am turning 22.
So the point of all that is that every year for my birthday I hold a little charity giving thing on a site called http://www.firstgiving.com. It's a very cool site that allows you to set up a page for an event and have all the donations go towards the charity of your choice.
My mother (being a proactive little bee) started a research and support advocacy group almost immediately after we were diagnosed called PXE International. And so, I'd love for you to go to my charity giving page and give as much or as little as you can. The organization runs solely off charitable donations.
Last year we raised over $2375 with your help. Hoping to top that this year. *fingers crossed*
I know that everyone is hurting and attempting to save money for various things in the future but even 10 dollars would go a long way towards helping these generous and hardworking people fight a disease that I am very personally invested in.
Thank you so much even if you just read this and can't give right now. It's so important to just be aware. <3
(If you donate please PM me your address and I'll send you a very cool personalized thank you note)