She took participation one step further and is also hosted a community walk in Galloway, OH. Her online fundraising page raised nearly $700 in the first day! ASF asked her to share her family’s story and her reasons for hosting an event.
We did not know there was a kidney disease in the family until my father’s kidneys failed. He had two failed transplants then passed away after 12 years of dialysis. He was 42 and I was 15. I had my kidney biopsy when I was 9. They did not have genetic testing at that time. Since no one in our family had hearing loss there was no apparent connection to Alport syndrome. We were never given a diagnosis. Fast forward to the summer of 2015. My then 13-year-old son underwent biopsy and genetic testing and we finally had a name for this disease. My uncle who lives in Tacoma had a successful kidney transplant. His grandson is now undergoing work up for the disease using the genetic information we received from my son. My 7-year-old son will have his genetic testing soon, as well.
Motivation for Hosting a Walk
There are several reasons I have chosen to participate in the ASF Virtual Walk. First, there aren’t any events that are close to home. Second, I have family all over North America. It is impossible for all of us to rally together at one event. The Virtual Walk, with its online component, gives us the opportunity to participate together. Third, it feels great to feel like I am doing something to fight this disease.
The Virtual Walk event started off as a way to get the local family involved. It was a way we could all get together and show my son our support. Then I thought, why not just host an actual walk. I emailed through the fundraising page and got such a good response that I put it out on Facebook. I quickly became overwhelmed by the outpouring of support. We have a lot of good friends and family that are all stepping up to help in various ways.
I honestly am still so touched and shocked by the outpouring of support. I did not expect this much so fast. I have a couple of theories. First, we have amazing friends and family. Second, when Jeffrey was diagnosed, we had so many people asking what they could do to help and I didn’t know what to tell them. When this came along, I think it gave us all a way to feel like we could make a difference.
I am really looking forward to my sons looking out at all of these people who have come to support them.
I have also found support through connecting with another Alport syndrome mom. I joined my office 3 years ago this summer. My first few weeks the office manager was out because her son was having a kidney transplant. He has Alport syndrome. Prior to meeting me, she had to go to the 5K for Healthy Kidneys in Arizona to meet other families with this disease. She has been there for me every step of this process. She is the one who told me to look up the Foundation. I feel so incredibly blessed to have her and her family to support us. She and her family will be at this walk as well.
Thank you to Celina and everyone else who participated in the 2016 Virtual Walk! If you are interested in supporting ASF via an athletic event of any type, please contact us.