Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bellerophon Therapeutics & CVS Health.

Shari Caffrey - phaware® interview 153

May 11, 2018

Shari Caffrey is the founder of TaylorsWish.org. Taylor’s Wish was created in memory of Taylor Renee Caffrey, Shari and Michael’s daughter and twin sister to Brooke. Taylor lost her battle with Pulmonary Hypertension at the tender age of 4 1/2 years.  In this episode, Shari discusses how she honors Taylor’s memory by helping raise awareness and funds for more research in order to find a cure for this widely unknown terminal illness. The 9th Annual Saturday, RACE 2 CURE PH takes place on May 12th in Anaheim, CA.

My name is Shari Caffrey. My daughter, Taylor, was diagnosed with PH at a very young age of three years old. Very shortly after she was diagnosed, we started going in to attack, if you want to use that terminology, but we were going to fight this to every depth of our soul. We started researching it and finding out what it was all about and what exactly is Pulmonary Hypertension.

Taylor has a twin sister, Brooke, and they were born about 10 weeks premature, so we had that challenge in the very, very beginning and thought that we went through all of those challenges and survived. You know, Taylor going through open heart surgery and closing a VSD in her heart and all of those things and thought that that was all behind us until we were faced with this. And this was way worse than anything we had gone through previously, which was kind of hard to imagine because that was pretty devastating in and of itself.

So, there we were traveling that path, didn't quite have a choice, and we weren't going to give up. So we battled that with Taylor for about a year and a half and then, sadly, she succumbed to the disease, and we kind of just lost our minds, as you can imagine and didn't know, really, where to go from there. What was going to be our purpose now? You know, we had Brooke. She was the reason for us moving forward, but that emptiness from losing Taylor was just so incredibly overwhelming and my husband, Michael, said,  "you know, you have to do something. I have work. We have Brooke and she needs you and you need to figure this out." So, that's kind of how the whole Taylor's Wish event evolved.

I'm a fighter, and I didn't want to quit fighting and I lost the battle with protecting Taylor but, now there were other people out there that had this disease and there were other fights to be fought, I guess. So, I did a lot of soul searching and figured, well, I want to raise awareness first and foremost and if I could raise funds and money for research that would be the cherry on top. I really didn't want any of this to happen to another family and I'm sure that if Taylor were still alive and she had one wish that, that wish would be to be with us and for this not to happen to another person. That's kind of how the whole Taylor's Wish name came about.

I was always volunteering for something all through childhood through adulthood and I loved to run. I was always involved in some kind of a running type activity. So I thought, well, I kind of know what this is all about. I thought well, let's do a 5K. Let's do a fun run. Let's do something where we could at least get some type of an activity going to bring attention to this cause and that's how it all started. Whenever I was thinking about what I wanted this event to look like, I wanted it to be some place that Taylor would want to go, because she was only four and a half and she loved, more than anything, being with her family. We always did everything together. Even if we had to go to Home Depot, we would go together as a family and we still do that to this day.

I wanted it to be a family type event because of that and because she was so young. And I thought, quite honestly, people that have children are going to get this. They're going to understand, not that somebody that doesn't have a child, wouldn't think that losing a child would be horrific, but when you have a child, you know you love that child more than anything in this world and the thought of losing them is unthinkable. A lot of times it makes people very uncomfortable when they find out that I lost Taylor and I realize that. I immediately go into, please don't feel uncomfortable, please don't feel sad. I want to tell you about pulmonary hypertension.

Yes, I wanted it to be a fun filled day. Yes, it's in memory of Taylor and this horrible thing happened to her but, guess what, there's people out there that are still living and living with this disease and we need to help them and we need to make others aware of it, that might not even realize they have it and educate people. So, I love that it's a family filled, fun day. It's not just your typical 5K where someone going, getting their t-shirt, they're doing the race, maybe they might have a couple of snacks at the end or a piece of fruit and a water and then they see you later and then there on with the rest of the day. Our event is definitely geared towards families and spending time together and having fun. So, after you're done with the race, you come back to the park and there's a silent auction and a raffle and vendors and food and balloon twisters and carnival games and a DJ. It's just very, very fun and that's exactly what I wanted it to be.

There is this one gentleman that I met in the very beginning and he has PH and he had an oxygen tank, and we had the Taylor's Wish booth set up, so that people with PH that weren't able to actually physically do the walk could still participate in the event, come and have a seat at the Taylor's Wish booth and sit and just enjoy each other's company and watch all the great things going on. And, I was helping him get a chair and he said, "oh, no, no. I'm doing this." And I said, "What?" And he said, "I'm going to do this race. You're here doing this for me, for Taylor, for everybody else that has PH, the very least I could do is participate in the race itself."

The course isn't the easiest. I mean, even some very experienced runners are like, holy moly, there's a lot of hills there. So, he went and walked this event pulling the oxygen tank behind him and he was the last one to cross the finish line, however, what an impact that had on me to look at someone who had every reason to give up or to just say, "Oh, I can't." And he, instead of saying, I can't, he said, I will. I'm going to do this and he did. He crossed the finish line and it's just so impactful how one person's actions can be. I just really admired him and he's come quite a few times. The last couple of times he hasn't been able to come. He's been kind of sick and every year I ask, "is he going to come, is he going to come?" I'm hoping that he feels well enough to come this year. I really don't care whether he walks it or not, I just like to see him and know that he's doing okay. But, that was just so inspirational to me. To see someone who seems like they have all the odds stacked against them and they're still in that fight mode. It was just so inspirational and uplifting to me. I just loved it, makes me want to keep doing it forever.

I'm Shari Caffrey and I'm aware that I'm rare.

Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: www.phaware.global/donate #phaware