“My hope is…to know there is something to always PHight for.”

By Sydni Burgess (caregiver)

“My mother, Rebecca “Becky” Burgess was diagnosed with pulmonary hypertension (PH) two years after I was born in 1997. To me, it was a regular day to help my mom change her batteries in her medicine pump, to make weekly visits to the hospital for labs or tests, or to see her with an oxygen mask on. As a young kid you aren’t paying attention to what is abnormal in your daily life compared to others, you are just going with the motions. Until those motions start to slow down, and you realize there are more hospital visits, oxygen is on for longer periods of time and it isn’t just the medicine pump anymore, it’s now IVs and more medicine. The strong and healthy mom you knew is now laying in bed, weak and out of breath. The nice doctors you’ve seen weren’t there to just squeeze your cheeks and give you a sticker, but they were there to give your parent a better shot and squeeze their hands, praying for a solution.

‘My mother fought PH for six years, and it wasn’t until I got older that I realized what PH patients truly go through and how much I admire the strength they show every day. My mom is the strongest woman I know. She didn’t look at PH as a downfall, and she never talked negative about what was happening to her body. She faced it head on with a smile on her face, and she knew that she had a family to fight for. When she found out about the Pulmonary Hypertension Association (PHA), she became a support group leader and wanted to help others, on top of dealing with her own health.

‘Now, as an adult and with a daughter of my own, I want to continue to raise awareness and fight for more affordable treatments and do whatever is necessary to find a cure to this disease. My hope is that people see it like my mom did, not as a bump in the road, but to just keep moving forward and take one day at a time and to know there is something to always PHight for. You never know who is looking up to you and who you are inspiring to be just as strong as you.

“Sincerely, a VERY proud daughter.”

link to the Right heart blog