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When Aria was born, we were told she could not see or hear and that nothing could be done to change that. At the time, we were just hoping to be able to take her home. After 45 days in the NICU at Riley Children's Hospital in Indianapolis (about an hour away from Muncie), we did get to take her home. She spent a lot of time shuttling back and forth to the hospital over the next four years and eight months--I think she had a total of 20 surgeries, and anytime she was sick she really couldn't recover on her own. Rachael and I spent a lot of time apart--me with Daisy at home, and Rachael with Aria in the hospital. Parents of kids with medical challenges know this routine all too well.
Six years ago today, Aria had a cornea transplant. It wasn't that simple. Surgeons close by refused to help, because they didn't think it was possible, or didn't think she was worth helping. I wish that last sentence were not true, but throughout Aria's life I was surprised at how common that opinion was, much of it coming from (supposed) medical professionals. But then we met Dr. Nischal, who is one of the world's leading surgeons (if not THE best in the world). He noticed that she had SOME eye function, and agreed to try to transplant a cornea.
So Rachael traveled from Muncie to Pittsburgh a couple times per month for almost a year. We had a date set and reported, only to be told that the cornea available was unusable. But on 12/16/13, Aria received her transplant. So today, it's fitting to announce the next Aria's Army fundraiser: the 2020 Birthday Campaign!
The goal of the 2020 Birthday Campaign is to raise $20,000 for the Fanconi Anemia Research Fund, to support not only research towards a cure, but especially the family support services they offer. You can read more about those here.
I've already secured a $5,000 donation to be used as matching funds to create the Leadership Circle. Your gift in the Leadership Circle will be matched TWICE: Once from the initial $5,000 pledge, and then again from the Birthday Campaign. In effect, the total impact will be THREE TIMES what you give here. In other words, a $250 gift has an impact of $750, a $500 gift has an impact of $1,500, and a $1,000 gift has an impact of $3,000. Tax receipts are available upon request. Once the Leadership Circle is completed by raising a total of $5,000, the Birthday Campaign will be launched with a total of $10,000 in matching funds. At that time, smaller donations will be accepted, and once the total goal of $20,000 has been raised, the campaign will conclude. I think this can all be completed by 1/11/2020, what should have been Aria's 9th birthday.
I understand that most people are probably not in a position to be part of the Leadership Circle. That's OK, especially if you're later able to help with the Birthday Campaign. Those donations will be matched too. The opportunity to attend Camp Sunshine with other families dealing with Fanconi Anemia changed my life, and that's what these dollars will do for others. In my mind, that's a pretty solid legacy for my little girl.
Six years ago today, Aria had a cornea transplant. It wasn't that simple. Surgeons close by refused to help, because they didn't think it was possible, or didn't think she was worth helping. I wish that last sentence were not true, but throughout Aria's life I was surprised at how common that opinion was, much of it coming from (supposed) medical professionals. But then we met Dr. Nischal, who is one of the world's leading surgeons (if not THE best in the world). He noticed that she had SOME eye function, and agreed to try to transplant a cornea.
So Rachael traveled from Muncie to Pittsburgh a couple times per month for almost a year. We had a date set and reported, only to be told that the cornea available was unusable. But on 12/16/13, Aria received her transplant. So today, it's fitting to announce the next Aria's Army fundraiser: the 2020 Birthday Campaign!
The goal of the 2020 Birthday Campaign is to raise $20,000 for the Fanconi Anemia Research Fund, to support not only research towards a cure, but especially the family support services they offer. You can read more about those here.
I've already secured a $5,000 donation to be used as matching funds to create the Leadership Circle. Your gift in the Leadership Circle will be matched TWICE: Once from the initial $5,000 pledge, and then again from the Birthday Campaign. In effect, the total impact will be THREE TIMES what you give here. In other words, a $250 gift has an impact of $750, a $500 gift has an impact of $1,500, and a $1,000 gift has an impact of $3,000. Tax receipts are available upon request. Once the Leadership Circle is completed by raising a total of $5,000, the Birthday Campaign will be launched with a total of $10,000 in matching funds. At that time, smaller donations will be accepted, and once the total goal of $20,000 has been raised, the campaign will conclude. I think this can all be completed by 1/11/2020, what should have been Aria's 9th birthday.
I understand that most people are probably not in a position to be part of the Leadership Circle. That's OK, especially if you're later able to help with the Birthday Campaign. Those donations will be matched too. The opportunity to attend Camp Sunshine with other families dealing with Fanconi Anemia changed my life, and that's what these dollars will do for others. In my mind, that's a pretty solid legacy for my little girl.
