Celebrating Life with the Breathe PHree Gala

As we conclude Awareness Month, PHA staffer Megan Mallory writes about a leader, a moment and the PH community...

Five and a half years ago, I joined PHA’s staff in the publications department, my primary responsibility being to put Pathlight together each quarter. About six months into my new position, a young woman named Katie Tobias contacted me about writing for the newsletter. Katie was 23 at the time. As with so many of our community members, Katie had a remarkable story to tell.

“I have always loved art: painting, drawing, you name it. Everyone knew me as the ‘creative one.’ … Then, in a heartbeat, everything changed. I found out I was in the ‘severe’ stage of PH and was ‘knocking on death’s door.’ When I first got out of the hospital, I lost everything, including my desire to do so much as pick up a pencil,” Katie wrote in her first Pathlight article, published in the spring of 2009.

Katie had a way with words, and lucky for us, she found her desire to pick up a pencil again. After that first article, she contributed several more pieces to the newsletter, even helping us to establish the Breath of Fresh Air column in Pathlight for Generation Hope, PHA’s community for PH patients in their teens, 20s and 30s. But then her health declined, and for more than a year, Katie was unable to contribute to Pathlight.

“At this moment, disease progression is inevitable. But this moment is all we have, so make the most of it. Allow yourself to feel the emotions but also know that no matter what life’s path has in store for you, there is ALWAYS a ray of hope illuminating every step,” Katie wrote in the winter 2011 issue of Pathlight just before taking the time she needed to devote to her health.

Katie (pictured left) and me at
the Breathe PHree Gala

That’s why this past Saturday, Nov. 23, was so special. Katie’s health has greatly improved, she has transitioned off IV medication, and she felt well enough to host the Breathe PHree Gala in Wilkes Barre, Pa., with more than 150 people in attendance. As PHA’s final special event of PH Awareness Month this November, I felt honored to represent PHA at this stellar event.

When I arrived at the hotel where the event took place, I walked into a banquet room filled with dinner tables, a spot for a DJ, a stage for a live band, and a table brimming with raffle items. It was quite an impressive site. And Katie was perfectly suited to the role of hostess for the evening. She greeted everyone as they arrived and introduced me to other patients in attendance. Shortly after dinner, she took the stage to explain to audience members what pulmonary hypertension means and why their attendance Saturday night was so important to the cause. She also acknowledged each patient in the room and dedicated the song “Keep Breathing” by Kerrie Roberts to, as she explained, “all PH patients – here and around the world – but also a very dear friend of mine, Jessa, who had her second lung transplant last night.”

Katie’s spirit is a perfect example of the hope that thrives in our community. We have countless stories of patients and their families facing this disease head on and inspiring others with their courage and determination. Katie’s event wraps up a month of these amazing stories, and we’ve been chronicling all of them on the PHA Daily Beat. I invite you to see what our amazing community has been up to this month.

And as we look ahead to 2014, the spirit of hope and determination just keeps growing. In June 2014, PHA will host its largest International PH Conference and Scientific Sessions to date, bringing together patients, caregivers and medical professionals from all over the globe to learn, share and connect.

I look forward to capturing all of this energy in the pages of Pathlight, and I’m excited to share that Katie’s first article in more than a year will be published this January. As she writes in her forthcoming article, “I am a PHighter. I am a Survivor. I am PHenomenal. We ALL are.” Be on the lookout for more from Katie and all of our amazing community members. And if you have stories to share, let us know! Contact me, Megan Mallory, at Print@PHAssociation.org. You are the energy that drives everything we do at PHA. Thank you for all that you do and for making November 2013 such an outstanding Awareness Month.