Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to my fundraising efforts. Many thanks for your support -- remember any and all donations, small or large are appreciated - and don't forget to forward this to anyone who you think might want to donate too! If you forward this to a friend and they contribute even $1, and then they forward it to their friends and they do the same, pretty soon all those dollars add up! And, I on purpose don't show donor amounts on my page so you can feel comfortable giving whatever works for you.
I am one of the very lucky ones. I am still here. This year has been a good one for me overall - I move much better and my skin is loosening. That makes me so happy! I still have club deformed hands, which ulcer every once in a while and won't heal. They look like the smallest little things but they hurt so much and every time you reach for something (in a purse, etc.) you have to be so careful and even then they get banged and hurt some more. The hand surgeon says not much to do except major surgeries to remove all the middle joints from both hands. I think I'll wait on that. But he did caution me about the real risk of bone infections and potential finger amputation from those ulcers. There is one other thing to try but it is not covered by insurance and isn't a guarantee it will work. That's on this year's agenda to at least explore further. And my heart and lungs are still a big question mark so I have some upcoming tests to see. My GI tract is a mess, but they fortunately have medicine I take every day, and I sleep semi-upright every night, so those help. All that said, I'm so, so blessed to be here and be with my family. I am thankful for that every day. Moving better makes living more "normal" easier and I'm very grateful for that, too.
Please help me fight this and ultimately find a cure. It is cruel how it affects so many things all at once in its worst form - the form I was "fortunate enough" to get. A 16 yr old is fighting this now and her courage inspires me. She should not have to suffer like she is at her age! And I would like not only for me, but for my family, a return to a more normal life. Then I can move on and help another disease charity, until all of the diseases are gone.
I so appreciate your help, friendship and support. They along with your prayers are what have gotten me through until now. Thank you for joining my team and being there on race/walk day in body or spirit, and/or contributing directly through this site.