Just before my daughter Mia turned 10, we started to notice that she wasn't breathing normally. She had never been a sporty kind of kid, but we started to worry when she stopped being able to dance, sing, or even walk a short distance without stopping to catch her breath. She was diagnosed with asthma and prescribed puffers. However, two months later, Mia started waking up in the middle of the night with chest pains, feeling as though she was having a heart attack. She began fainting and seizing, had no energy, her skin looked greyish, and her lips were slightly blue.
In the course of a few months, she went from belting out her lines in a musical theatre competition to barely being able to walk across the stage. We couldn't get on board with the doctor’s asthma diagnosis so we sought a second opinion from the Newmarket South Lake Hospital, where thankfully a doctor knew of PH and referred us to a cardiologist. We were referred to the pediatric PH team at the Toronto Sick Kids Hospital and, after what felt like a trillion tests, Mia’s PH was confirmed. Hearing a doctor tell you that your child has a progressive lung disease that is affecting her heart, and then hearing them say there is no cure for it is a parent’s worst nightmare.
PH has impacted our family’s life in many ways. First, we had to understand that with PH there is no normal; normal literally doesn't exist in our world. “Live every day as though it was your last” has become our family’s new motto, although it’s easier said than done. We are starting to accept that we really can't make plans, because they can get cancelled in an instant, so we've become "last minute joiners."
We are learning as a family what is important and what isn't, and choose outings and activities based on Mia’s fragile health. We now focus on relationships and the people we love. As a result, we spend more time together and talk, laugh, smile, and hug more. As a family we communicate much better and it seems that there is hardly any yelling in our house anymore. Everybody helps everybody else; we do things together and everyone has a voice.
We became involved with PHA Canada soon after Mia’s diagnosis. As soon as my husband heard the words “pulmonary hypertension,” he wanted to learn everything he could about the disease, did some research, and came across PHA Canada. Being a former Activity Director, organizing social activities is my second nature and I wanted to get involved in raising awareness of PH by getting the word out there. I believe that the more people know about PH, the less patients will be given the wrong diagnosis and continue to suffer; the more people know about PH, the more money they can donate towards awareness, research, and finding a cure.
So, with the help of friends and family, the Berdan-Clan organized a number of awareness and fundraising activities. We gave away information along with candy at Halloween; we organized the Be Brave and Sparkle PHundraiser for PH Awareness Month; marched to raise awareness at our local Santa Claus parade; held an Awareness Assembly; organized a benefit Christmas Concert; and turned teacher holiday gifts into an occasion to raise funds. The last few months of 2016 were a very busy time for our PHamily! None of it could have happened without the help of our PHabulous PHriends, whom we know love our family so much they would do whatever it takes to drop kick PH into extinction!
Organizing these events, I was overwhelmed by people’s generosity and I am still surprised by the support we continue to receive. Having a kid with PH can be pretty isolating, especially during the winter months with sickness everywhere and germs spreading like wildfire, yet we never really feel alone. People seem to have rallied around us in our time of need; I call them my “feel-better-fairies.” They've supported us in every way imaginable and have made it possible for us to care for Mia more easily.
My hope for the not-so-distant future is that we find a cure for PH and I believe it’s going to take a huge village to win this PHight. In the meantime, my hope for Mia is the same as my hope for her little sister, Allie. I hope she gets the chance to become everything that she was meant to be, that she'll always be comfortable with exactly who she is, and that she'll love herself enough to confidently make good life choices.
My family has learned that blood doesn't make people PHamily; unconditional love, support, and a common goal do. We have a huge PHamily!
Contributed by Chris Berdan, 2017