In honor of Father’s Day, NORD spoke with volunteer advocate Steve K., father to two-year-old Hannah, about his connection to rare disease through his late wife, Stacey. Read about Steve’s family’s journey and how it led him to run in the New York City Marathon to raise money for NORD and awareness for Stacey’s condition.
First, give us some background about your family. How did you and Stacey meet? And what was your journey to fatherhood like?
Stacey and I met as Seniors at the University of Maryland back in 2010. A classic fraternity/sorority love story. We already had lots of mutual friends, then Stacey asked me out to one of her sorority events and we hit it off from there.
My journey to fatherhood was a struggle and took a lot of time and savings. After Stacey was diagnosed in 2016 with Pulmonary Hypertension, it became clear she would never be able to safely carry a pregnancy because of the drugs she was on and because getting pregnant could kill her. We saved for years and years and found our amazing surrogate, Melissa, through an agency. After creating embryos, she carried Hannah for us and Hannah was born in Boise, Idaho (where Melissa is from) on October 2, 2021!
Tell us about your connection to rare disease. I understand Stacey never received an official diagnosis for her lung condition. How did that process unfold for her, and what was that like for you, as a father and husband?
This all started in 2015, when Stacey got a blood clot three weeks after we got engaged. We never got a diagnosis for her underlying autoimmune condition that resulted in another rare condition, pulmonary hypertension. We traveled the entire country. Stacey had a 12-hour surgery at UC San Diego Hospital with the best doctors in the country for pulmonary hypertension. She had another procedure done at Mass General Hospital in Boston. We went to Mayo Clinic in Minnesota, Georgetown, John’s Hopkins, Penn, and several hospitals in New York searching for answers. No one had ever seen what Stacey had. The closest we came to an answer was at Mayo Clinic, but they didn’t think anything could be done.
When we moved to New York in 2018 and Stacey was under the care of an amazing doctor at Mt. Sinai, her condition finally stabilized after three years. She went through all of COVID-19 without having a hospital stay after being in the hospital several times a year from 2015-2018. Once they began treating the pulmonary hypertension and her condition became more stable, they weren’t as concerned about the underlying autoimmune condition as it wasn’t actively “killing” her.
However, in December 2022, Stacey started experiencing chest pains late one evening and was gone fivehours later.
As a husband and father, I stayed supportive of Stacey until the end and we never stopped looking for answers. I was a shoulder to cry on and always tried to keep Stacey positive, which was easy as she was the most positive person ever.It is almost a blessing that she got to enjoy 15 months with Hannah not knowing that the end was near.
Losing a loved one is incredibly difficult, and I imagine doubly so as a father, both grieving and helping your child process their grief. What does that look like for you and Hannah?
It was shocking and it was horrible, I’m not going to lie. Stacey’s loss came out of nowhere. Life is hard right now, but I have two very supportive sisters, Arielle and Dahlia, who are very supportive, live close by, and are always there at the drop of a hat if I need anything. I had to learn how to be a solo parent—there was no advance planning for this. Life is chaotic and overwhelming, but Hannah is thriving, I am doing very well, and I believe Stacey is watching over us.
Hannah is so young that I don’t think she really has realized what has happened yet, but she has started asking about Mommy lately and I say Mommy is in heaven. It’s heartbreaking and it’s definitely something I’m going to have to continue to navigate and have tough conversations with her about.
You made the decision to get involved as a rare disease advocate for the National Organization for Rare Disorders (NORD), running in the NYC Marathon in 2023 in honor of Stacey. Describe your decision to get involved in advocacy, and why you chose NORD and Running for Rare.
Stacey would always post about Rare Disease Day. We had raised money for the Pulmonary Hypertension Association (PHA), a NORD Member organization, after she passed away, but I wanted to look into organizations that not only assisted with pulmonary hypertension, but the underlying autoimmune condition that was undiagnosed. It was very hard not getting answers and I wanted to bring attention and awareness to rare diseases.
I did some research and found NORD Running for Rare and it was perfect. I also saw where the money I raised was going to go—to help families fly around the country and seek answers from the specialists—and I wanted families to have the opportunity to do that just like we did when we went to Boston, Mayo Clinic, UCSD, etc.I love the cause, the organization, and the community. Jaime Pacheco (NORD’s Donor Engagement and Events Manager, who manages our Running for Rare program) is absolutely incredible. I hope to be involved with NORD and Running for Rare for many years to come.
In terms of why I chose to run in the NYC Marathon, Stacey and I would always watch the Marathon every year—we live right next to the finish line in Columbus Circle. Our surrogate, Melissa, was visiting from Idaho during marathon weekend 2022, seven weeks before Stacey’s unexpected passing. I went to Stacey in tears of emotion and said next year I’m going to get in shape and run the marathon to raise awareness for her disorder. She said, “I would never get over the high of seeing you run in the marathon.” After her passing, I committed to getting in shape, lost 90 pounds, and ran it. It was exhilarating.
Do you have any plans for future rare disease advocacy or fundraising now that you’ve completed the Marathon? Tell us what’s next for you.
Yes, absolutely! I am continuing to run, getting involved with a NORD committee, and I hope to one day run the Boston Marathon with NORD. I’m sure there will be other races I do with NORD along the way, too. Possibly the Marine Corps 10k in October!
How is Hannah these days? Is she old enough yet to begin to understand the good work you are doing? Give us a peek into your life together.
Hannah is adorable. She has full-on conversations. She is going to be starting preschool this fall! She says, “go Daddy, go” and “Daddy runs fast” and is there at every race cheering me on. We are besties.
Do you have any Father’s Day plans this year?
We are going to start the day as we always do on Father’s Day: Hannah is going to come with me to the driving range. We have matching shirts that Stacey made. Then, we are going to a family brunch and will round out the day going to dinner for Father’s Day and my sister Dahlia’s 25th birthday at Peter Lugers!
Well, from all of us at NORD, we are so proud of your advocacy and the example you have set as a rare husband and father. We wish you and Hannah many peaceful, joyous years ahead, and we hope you have a happy Father’s Day.
If you want to get involved in NORD Running for Rare as a runner or rare disease Community Partner, we have so many opportunities for patients and loved ones of all backgrounds. Get started at runningforrare.org.
