{"id":270817,"date":"2024-06-14T15:07:55","date_gmt":"2024-06-14T19:07:55","guid":{"rendered":"https:\/\/rarediseases.org\/?p=270817"},"modified":"2024-06-14T15:09:16","modified_gmt":"2024-06-14T19:09:16","slug":"fathers-day-steve-k","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/fathers-day-steve-k\/","title":{"rendered":"Grief as Fuel for Advocacy: Steve\u2019s Story in Honor of Father\u2019s Day"},"content":{"rendered":"

In honor of Father\u2019s 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\u2019s family\u2019s journey and how it led him to run in the New York City Marathon to raise money for NORD and awareness for Stacey\u2019s condition.<\/span><\/i>\u00a0<\/span><\/p>\n

First, give us some background about your family. How did you and Stacey meet? And what was your journey to fatherhood like?<\/span><\/b>\u00a0<\/span><\/p>\n

\"Steve,<\/p>\n

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.\u00a0<\/span>\u00a0<\/span><\/p>\n

My journey to fatherhood was a struggle and took a lot of time and savings. After Stacey was diagnosed in 2016 with <\/span>Pulmonary Hypertension<\/span><\/a>, 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!<\/span>\u00a0<\/span><\/p>\n

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? <\/span><\/b>\u00a0<\/span><\/p>\n

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\u2019s 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\u2019t think anything could be done. <\/span>\u00a0<\/span><\/p>\n

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\u2019t as concerned about the underlying autoimmune condition as it wasn\u2019t actively \u201ckilling\u201d her. <\/span>\u00a0<\/span><\/p>\n

However, in December 2022, Stacey started experiencing chest pains late one evening and was gone five\u00a0hours later. <\/span>\u00a0<\/span><\/p>\n

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.\u00a0It is almost a blessing that she got to enjoy 15 months with Hannah not knowing that the end was near.<\/span>\u00a0<\/span><\/p>\n

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? <\/span><\/b>\u00a0<\/span><\/p>\n

It was shocking and it was horrible, I\u2019m not going to lie. Stacey\u2019s 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\u2014there 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. <\/span>\u00a0<\/span><\/p>\n

Hannah is so young that I don\u2019t 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\u2019s heartbreaking and it\u2019s definitely something I\u2019m going to have to continue to navigate and have tough conversations with her about.<\/span>\u00a0<\/span><\/p>\n

You made the decision to get involved as a rare disease advocate for the National Organization for Rare Disorders (NORD), <\/span><\/b>running in the NYC Marathon in 2023<\/span><\/b><\/a> in honor of Stacey. Describe your decision to get involved in advocacy, and why you chose NORD and Running for Rare.<\/span><\/b><\/p>\n

\"SteveStacey would always post about Rare Disease Day<\/a>. We had raised money for the <\/span>Pulmonary Hypertension Association (PHA)<\/span><\/a>, 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. <\/span>\u00a0<\/span><\/p>\n

I did some research and found <\/span>NORD Running for Rare<\/span><\/a> and it was perfect. I also saw where the money I raised was going to go\u2014to help families fly around the country and seek answers from the specialists\u2014and I wanted families to have the opportunity to do that just like we did when we went to Boston, Mayo Clinic, UCSD, etc.\u00a0I love the cause, the organization, and the community. Jaime Pacheco (NORD\u2019s 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.<\/span>\u00a0<\/span><\/p>\n

In terms of why I chose to run in the NYC Marathon, Stacey and I would always watch the Marathon every year\u2014we 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\u2019s unexpected passing. I went to Stacey in tears of emotion and said next year I\u2019m going to get in shape and run the marathon to raise awareness for her disorder. She said, \u201cI would never get over the high of seeing you run in the marathon.\u201d After her passing, I committed to getting in shape, lost 90 pounds, and ran it. It was exhilarating.<\/span>\u00a0<\/span><\/p>\n

Do you have any plans for future rare disease advocacy or fundraising now that you\u2019ve completed the Marathon? Tell us what\u2019s next for you.<\/span><\/b>\u00a0<\/span><\/p>\n

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\u2019m sure there will be other races I do with NORD along the way, too. Possibly the Marine Corps 10k in October!<\/span>\u00a0<\/span><\/p>\n

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.<\/span><\/b>\u00a0<\/span><\/p>\n

Hannah is adorable. She has full-on conversations. She is going to be starting preschool this fall! She says, \u201cgo Daddy, go\u201d and \u201cDaddy runs fast\u201d and is there at every race cheering me on. We are besties.\u00a0<\/span>\u00a0<\/span><\/p>\n

Do you have any Father\u2019s Day plans this year?<\/span><\/b>\u00a0<\/span><\/p>\n

\"SteveWe are going to start the day as we always do on Father\u2019s 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\u2019s Day and my sister Dahlia\u2019s 25th birthday at Peter Lugers!<\/span><\/p>\n

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\u2019s Day.<\/span><\/b>\u00a0<\/span><\/p>\n

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 <\/span><\/i>runningforrare.org<\/span><\/i><\/a>.<\/span><\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

In honor of Father\u2019s 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\u2019s … <\/p>\n

Continue reading “Grief as Fuel for Advocacy: Steve\u2019s Story in Honor of Father\u2019s Day”<\/span><\/a><\/p>\n","protected":false},"author":13,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505],"tags":[4305,591,2231,975],"class_list":["post-270817","post","type-post","status-publish","format-standard","hentry","category-patient-stories","tag-autoimmune-disorder","tag-fathers-day","tag-pulmonary-hypertension","tag-running-for-rare"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/270817","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=270817"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/270817\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=270817"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=270817"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=270817"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}