My name is Kelly Weishaar. I am married to Jeremy's brother, Peter. I am Jonah's aunt. He is my only nephew and my children's only cousin.
I live in upstate New York, far away from the excitement of the Big City. Also, far away from Jonah, Jeremy, and Jill. Many of Jill's blog readers will understand the feeling of "helplessness" experienced by the family and friends of the people who are diagnosed with, or raising a child with, a rare and deadly disease. My family is too far away to show our support by attending fundraisers, hanging up flyers around the neighborhood, or flying across the country to attend conferences with the scientists who will eventually find a cure. We would do these things, if we could, but it is not a possibility.
So, we are left with a feeling of being unable to help in any significant way.
Jonah's cousins, Jacob and Faith, are young right now. They have no understanding of Jonah's disease, and how it will progress over time if a treatment is not found. As their parent, I know someday I will need to have a painful conversation with them about Jonah's disease. It brings tears to my eyes to think about that day. When that talk happens, I want to be able to focus on all the ways that have been found to help Jonah. I want to be able to explain to them all the ways people around the world pulled together to find a cure. I want to be able to tell them how our family helped and showed Jonah our love and support, from far away.
I have set up a donation site, for the month of February, in honor of Rare Disease Day. Rare Disease Day will be recognized on February 29, 2012. The logo for the day is "Rare But Strong Together." Jill has shared a lot of information about this day of awareness, as well as ways people can support the ULTRA Act. A cure/treatment cannot be found without funding. Please consider making a donation to Jonah's Just Begun. It means a lot to Jonah, and to his whole family.