Born in Auckland, New Zealand, Rebekah was sick a lot as a toddler with colds and even pneumonia. That didn’t stop her from being active like any other child as her parents searched for answers for her continued illnesses. When she was two and a half, she was jumping on a trampoline, struggling to breathe and turning very blue. The mother of a playmate, who as an infant had been diagnosed with a heart condition, asked Rebekah’s Mom if her daughter had been checked for heart disease. Back to the pediatrician they went, determined to find some answers. Jacinta and Richard learned that their first-born daughter suffered from pulmonary hypertension (PH) with a large hole in her heart and likely wouldn’t make it to 5 years of age. The size of the hole relieved the high pulmonary arterial pressure, masking any heart murmur and allowing Rebekah to push her limits and stay relatively active.
When Rebekah was eight, her family moved from New Zealand to New Jersey with her Dad’s job transfer. The proximity to NYC meant Rebekah became a patient of Dr. Diane Kerstein at the Pediatric PH Center at Columbia University Medical Center (CUMC)/New York-Presbyterian Hospital, one of the nation’s first PHA-accredited Centers of Comprehensive Care. Prior to the move, Rebekah was a keen equestrian, loved singing and spending her days in the ocean. Within the constraints of her illness, she continued horseback riding for several years and began taking voice lessons, performing opera recitals and singing in her church choir.
As a young girl, Rebekah was somewhat conscious of her limitations, but didn’t think anything could or should stop her from doing what she saw other kids doing. Doubt would crop up when classmates questioned her ability to contribute to PE team events or made comments about her slow pace holding them back on class trips. “I was determined to prove them wrong and partly prove to myself I wasn’t different. So, I would run the sprints during PE or try to talk and walk while with the class and ultimately, I was the one who took the downfall. I’d end up in the nurse’s office, winded, on oxygen trying to prevent the inevitable headache and realized that I was making my differences more prominent by simply not being confident enough to just take a step back and accept my limitations in the first place”. These seemingly harmless comments from students did occasionally need parental interference and Rebekah says she’s glad her parents had her back because sometimes kids don’t realize what they say can become destructive if left unchecked.
In college, Rebekah majored in Finance and Accounting with a minor in Marketing. She was Student President of the Business School and worked several part-time jobs. Rebekah recently moved into a middle management position with an Australian bank in New York. With her new job came a new apartment and a new roommate – her grade school “elevator buddy”, Mary Grace, who she had recently reunited with.
Rebekah’s biggest support system has always been her parents and two younger sisters. Jessica, 24, and Sophie, 20, are fiercely protective of Rebekah and will call out intolerance. “Jess is a quieter person, but she has a caring sassy side and has no problem setting the record straight. Soph, I would never cross, because she will go to the edge of the world and back for those she cares about”. Rebekah recalls several instances where people have made comments about her condition, or don’t believe she has a condition (sadly many times getting nasty comments from other PH patients), and her sisters are the first people to jump to her defense. “They are my everything, my friends, and my family. They always amaze me at the support they show, but they also encourage me to try new things and give me the confidence to test my limitations”.
Today, Rebekah takes a combination of two of the 15 FDA-approved PH medications, Letaris® and Adcirca®, in addition to warfarin. With the combination therapy, she only needs oxygen at night, when flying or when she’s feeling rundown or unwell. For the most part, Rebekah said she feels pretty good and has learned to manage what she has. Enjoying life and living it fully are priorities. She takes time to exercise, enjoy short jogs, paddle boarding and working out at the gym, and continues singing opera and in her church choir. It took slow and continuous work to get to that point and days off from moving or being active certainly cause a step back the next day.
“I’ve been singing since I was little. Mum used to say ‘it’s ok you’re missing a part of your heart; God gave you a voice to make up for it’. She also says ‘God made your head stronger than your heart’, which speaks to just how stubborn I can be. I laugh whenever she says that, because my family knows they can’t tell me I cannot do something because I will seek to prove them wrong”. However, she said “when I’m sick, I’m really sick and when I’m feeling great, I’m feeling on top of the world.”
Great enough that she has climbed the Statue of Liberty with family, Sacre Couer in Paris with a colleague, bungee jumped in New Zealand with a roommate, and completed several 3km walks with friends. They will stop and breathe with her, piggy back her when needed and slow down when it’s a bad breathing day, but they know Rebekah won’t give up, so they hold each other accountable to complete the goal they set out for. She’s also lucky her Dad and sister, Jess, love rollercoasters just as much and were, possibly hesistantly, willing buddies for Disney’s Mission Space ride when it first opened – which of course she rode despite the obligatory signs warning people with heart conditions against riding. “I loved it,” she laughed, “you live once, and my motto is ‘I am not what happened to me, I am what I’ve chosen to become’. I have to keep living.”
Rebekah makes time to ensure that others with PH also get support. Rebekah’s putting together a team for Pulmonary Hypertension Association (PHA)’s 2018 Philadelphia’s September 22nd, O2 Breathe fundraiser. She has already raised more than $7,000 for PHA, the nation’s largest PH-related nonprofit, which provides comprehensive resources and programs that support individuals, families, health care professionals and PH researchers. Last year, her family and church members joined her in raising funds for PHA’s Philadelphia O2 breathe walk for a team Rebekah named, “Take My Breath Away.”
Rebekah also makes time for other causes. In March, she joined her roommate, a teacher in Harlem, and her students in for the 3mile March for Our Lives in NYC. She also volunteers with the USO support center at Newark airport for members of the armed forces and sponsors soldiers stationed overseas.
Now 26, Rebekah looks at every day as a gift. She refuses to see her health condition as anything more than what it is. She has dreams of love, adventure and continued career success, and knows her family and friends will be with her throughout the journey for many years to come.
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Note: Meet Rebekah Calverley during her Pulmonary Hypertension Association World PH Month Facebook Live mini-concert and Q & A session. She will also be the keynote speaker at the PHA International PH Conference and Scientific Sessions’ Closing Brunch, Sunday, July 1, 11 am – noon in Orlando, Fl.
For more information on the Philadelphia O2 Breathe walk or to join Team Take my Breath Away go to: http://www.phaevents.org/goto/TakemyBreathAway
