Addie's CF Fund
Donation protected
For the last 13 years, our family has participated in the Great Strides Walk to raise funds for cystic fibrosis research. We still have our team and my family will be raising funds, but this year, I am taking a break. Over the years, our families (from both sides) have raised more than a quarter of a million dollars for the Cystic Fibrosis Foundation.
This year, I not only need the emotional break from fundraising but the personal support for Addie. As most of you know, this has been a tough year for her. She cultured Pseudomonas, then Aspergillus and her stomach issues have caused her to only attend school half-days. The “side effects” of CF are not only physical, but emotional and financial. We have relatively good insurance at the moment, but there are still out-of-pocket expenses and she requires supplements, vitamins, equipment that are not covered. We also never know when the political ball will drop. When just one of her medications, out of several, costs over $7,000/month, it is scary not to have a backup plan for meds that allow her to eat and to breathe. Not knowing whether pre-existing conditions will be covered or a change in insurance will create a lapse in coverage/care/meds is the stuff of nightmares.
The biggest issue, as a single-parent with full-custody and as sole financial provider is that I have had to reduce work hours. If you know me, you know I work hard. But balancing the full-time care of a CF kiddo, working, managing a house and doing it all on my own has taken its toll.
As much as it pains me to divert any potential donation to the CF Foundation to us personally, I have to do what is best for Addie. I have battled the need to do this in my head and heart, knowing that CF families are crowd-sourcing for lung-transplants. But my answer came to me this morning. And it was this: I want to prevent a lung-transplant. And to do that, I need to keep Addie healthy, to provide for her, even if it means swallowing my pride and asking for help to do that.
If you do make a donation for our little family, your donation will go to her care. Please keep in mind you will see us on FB visiting Los Angeles, and you may think, “Well if she has money to travel, why did I just donate $20?” I work in Los Angeles and am required to travel there several times a year and I receive no assistance in doing so.
Maybe someday I will sell a script or be superwoman but until then I want to make sure Addie has everything she needs to keep those lungs healthy for the day when we DO have a cure. Thank you.
This year, I not only need the emotional break from fundraising but the personal support for Addie. As most of you know, this has been a tough year for her. She cultured Pseudomonas, then Aspergillus and her stomach issues have caused her to only attend school half-days. The “side effects” of CF are not only physical, but emotional and financial. We have relatively good insurance at the moment, but there are still out-of-pocket expenses and she requires supplements, vitamins, equipment that are not covered. We also never know when the political ball will drop. When just one of her medications, out of several, costs over $7,000/month, it is scary not to have a backup plan for meds that allow her to eat and to breathe. Not knowing whether pre-existing conditions will be covered or a change in insurance will create a lapse in coverage/care/meds is the stuff of nightmares.
The biggest issue, as a single-parent with full-custody and as sole financial provider is that I have had to reduce work hours. If you know me, you know I work hard. But balancing the full-time care of a CF kiddo, working, managing a house and doing it all on my own has taken its toll.
As much as it pains me to divert any potential donation to the CF Foundation to us personally, I have to do what is best for Addie. I have battled the need to do this in my head and heart, knowing that CF families are crowd-sourcing for lung-transplants. But my answer came to me this morning. And it was this: I want to prevent a lung-transplant. And to do that, I need to keep Addie healthy, to provide for her, even if it means swallowing my pride and asking for help to do that.
If you do make a donation for our little family, your donation will go to her care. Please keep in mind you will see us on FB visiting Los Angeles, and you may think, “Well if she has money to travel, why did I just donate $20?” I work in Los Angeles and am required to travel there several times a year and I receive no assistance in doing so.
Maybe someday I will sell a script or be superwoman but until then I want to make sure Addie has everything she needs to keep those lungs healthy for the day when we DO have a cure. Thank you.
Organizer
Elise Gustafson Free
Organizer
Urbandale, IA
