I’ll post a more noteworthy update on Will’s status later, but I wanted to post that we had another chance to share Will’s story on the news this last week, this time on channel 12 and this time in English!
As I shared before, its been interesting to go through this process of publicizing your family and your challenges when we like to keep to ourselves but I keep telling myself that if our story can help someone else then I’m happy to share (or complain as I like to call it!). So last Saturday we received an inquiry from a reporter at Channel 12 to interview us. We weren’t eager but it was easier this time to agree since we have already been down this road a bit. After some logistical back and forth we set up a short zoom call with Jade Cunningham where we answered her questions from Will’s hospital room and shared our story.
As always with these things, you are at the mercy of how they interpret and share your story. I know they have an angle they were trying to hit with our story. We answered her questions to the best of our ability and I think the end piece was decent if not a little light on some of the details we wanted to get across on the broader picture.
For instance, I’ve mentioned this on the blog here before but I shared my thoughts about the amazing team at Phoenix Children’s, the overall mood of this place from the staff down to the patients and the lessons that has taught me in humility over the last year. Unfortunately that part didn’t make the cut. I’ll echo again that despite the depressing situation we have found ourselves in over the last year that our frequent (understatement) trips to the Phoenix Children’s Hospital, from the clinic to the emergency room to the BMT unit and everywhere and in between have been some of the brightest and most uplifting moments in this whole process. To see so many people facing life threatening challenges, to still but on a brave face and not only to move forward but to find a way to do it with a smile. It’s incredible and makes me thankful for the spirit that embodies this place.
I also wanted to call out COTA and BeTheMatch.org for everything they do as well. Our story is about William but I hope if people get anything from our story its not necessarily about us, but the countless other families going through the same or worse.
That brings me to my ultimate question, why are we newsworthy? It’s a rhetorical question. I know why we are newsworthy, it was one of the first questions we were asked during our interview and a big part of the angle they took with it. I don’t shy away from the fact that we lost Alex seven years ago, that we lost him to what we now believe to be the same genetic mutation that Will has and that this process is literally saving his life. Still, I feel like its just us you know?
All that said, I’m grateful for the opportunity we have to go through this experience and personally what it has taught me. I’m glad that I’m forced to look past my overwhelming selfishness and be humbled by what others are going through and learning from the example of so many of the people we have encountered. Please don’t just look to Will and our family to see how you can help. So much of this burden has been eased by the generosity of others, both financially to COTA for WillPower and with their time and talents. I’ve been fortunate enough to be on the receiving end of much of that and would hope that we can all carry that same spirit on even when its not impacting someone that we know directly.
Anywho, long winded intro aside, here is the link to the article and the video if you would like to watch.
As always, you stay classy San Diego!