Finding Strength Through Family and Community | Jerome Harper

Welcome to My Hero 360! In this important interview, Kerri Fitzgerald sits down with Jerome Harper, a nonprofit CFO who speaks about his family’s experience with Marfan syndrome. The genetic condition has impacted at least 3 generations of Jerome’s family. The health challenges Jerome has faced and the community he has built helped him lean into his vulnerabilities and faith to consistently overcome his circumstances.

Key Highlights:

• Hear how Jerome Harper and his family dealt with the health challenges associated with the genetic condition Marfan syndrome.
• Learn about how Jerome found community in family and The Marfan Foundation.
• Hear how Jerome made a decision to live every day and consistently overcome challenges.
• Be inspired by Jerome’s positive message to others who may be facing a struggle.

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Transcript:

Kerri Fitzgerald:

Hi everyone, and welcome to My Hero 360. My name is Kerri, and today we are highlighting Jerome Harper’s hero story. Here at My Hero 360, we seek to amplify the voices and remarkable individuals whose stories ignite inspiration and drive positive change. Jerome, your story does just that, and we’re thrilled to have you here graciously telling your story today. To start, can you introduce yourself and give a little bit of background to our audience so they can get to know you better?

Jerome Harper:

Sure, absolutely. Thank you so much, Kerri, for inviting me and for [My Hero] 360 and meeting with your team. It was an awesome experience. I’m definitely looking forward to our conversation. As Kerri mentioned, I’m Jerome Harper. I currently reside in Cary, North Carolina with my wife. We’re almost celebrating 7 years, which is big, and my 2 children, Josiah and Alani, who’s soon to be 3. I have a connective tissue disorder called Marfan syndrome, and it’s a defect in what’s called the fibrillin-1 gene that causes your bones and your joints and your connective tissue as a whole to be more limbal because of the lack of protein in your body. My mom is what’s called a spontaneous mutation, and all 3 of her children, including myself, were also diagnosed at early ages with Marfan syndrome. As a result of having Marfan syndrome, I’ve been through a lot of different procedures and surgeries and had to overcome a lot of different adversities, which I’m sure we’ll get into even more.

Kerri Fitzgerald:

Thank you for that, Jerome. As you mentioned, you were diagnosed with Marfan syndrome when you were 5, and you said that it took a considerable toll on you when you were a teen. You were going through different surgeries and things you were dealing with. Can you reflect on how this experience shaped your growth during those formative years? Teenage years can be a challenging and transitional time for many people, and this is just an added layer to that.What advice do you have for people who are experiencing something similar?

Jerome Harper:

Yeah, I would say my teenage years were very tough, very challenging for me. At the age of 15, I went through an 11-hour spinal fusion surgery as a result of scoliosis, which is also a part of Marfan syndrome. That affected my mobility with standing, sitting, being able to do physical activities. I love playing sports and I was no longer able to do so, at least contact sports and things of that nature. Since the age of 15, I’ve had a rod in my back from the top of my back down to the lower part and over 2 dozen screws in my back as well. That was extremely challenging for me. Later that year, at the age of 16, I went permanently totally blind in my right eye due to a retina detachment. That’s also a result of Marfan syndrome that a lot of people, including some of my family members, experienced.

Also that next year, now I’m a senior in high school I was told that my aortic valve was enlarging and it was dilated to about 4.5 and that pretty soon I would need a surgery, an open heart surgery, and if not, that there will be a chance that it would rupture and that I would bleed out. Hearing those and experiencing that was challenging for me because honestly all I wanted to do was prepare for prom, graduate high school, and go to the next party with my friends. But what actually the reality was that I had and continued to have a severe genetic connective tissue disorder that affected my day-to-day lifestyle. There was things that I would not be able to do and that I could not do that I wanted to do. Some things I still tried to do physical activity and playing sports and partying with friends, but it was extremely important for me to understand that that was not something that I needed to do.

But it caused so many insecurities, so many fears. I had a fear of death. I was haunted by that from about the age of 15 to about 25, because I was told, “At any moment you can pass out, Jerome, and that you need to get your aortic valve replaced.” Because I had already been through so much with my eyes and the scoliosis treatment that I said, I was just scared that if I went under the knife to get that surgery that I wasn’t going to make it. I actually, out of fear, I opted out of getting a surgery. I had the mindset that it is what it is, that, “Hey, I’m going to live, whatever that looks like.” I was saying, “Hey, it is God’s will that I go.” But I accepted death at the age of 17 years old.

Kerri Fitzgerald:

Wow. That’s a heavy thing to wrap your head around at that age.

Jerome Harper:

If you could say I had a strategy, my strategy was to put it in the back of my mind. Unfortunately, every time I went to go see an ophthalmologist or orthopedic or my cardiologist, which was every 6 months to a year, I was reminded that, “Jerome, you have a severe genetic condition.” I didn’t know how to handle it. Thankfully, I had my mom who went through, at the time, 3 open heart surgeries. I had my brothers who also had issues with their eyes. We were a tight community in which we would encourage one another and we would pray for one another and be present in the midst of those times.

Kerri Fitzgerald:

On that topic, you’ve mentioned that 3 generations of your family that you know about have been affected by Marfan syndrome, which does carry a genetic component to it. Can you talk a little bit more about how the condition impacted your family?

Jerome Harper:

Yeah, honestly, we felt like normal. Like I said, my mom was what’s called the carrier of Marfan syndrome, that fibrillin-1 gene that defect in that gene. My brothers along with myself carry that gene, but also my older brother, his youngest daughter who is 7 now, has Marfan syndrome as well. It was challenging for us, like I’ve mentioned earlier, growing up, just wanting to be normal, wanting to do things that normal kids would do and just having fun.

But we would be told by physician, “Hey, you know can’t do this.” Tell my mom, “Hey, you know you have to watch out for them. They can’t do that.” Another thing that comes with most patients with Marfan syndrome is we’re very tall and slender. Like, I’m 6’4″, my brothers were 6’8″ and 6’6″. Everywhere we go, people say, “Hey, you play ball? You play ball?” As a teen I had to say no, and I loved it and I enjoyed it. But again, that calls more for insecurities and everything, but we again were able to create our own little cohort and support one another and encourage each other on that end.

Kerri Fitzgerald:

It is nice that you were able to support each other, but what about the emotional toll? You’re not only grappling with your own experience with this. When someone, a loved one, a family member also is having a health challenge, that’s another toll on you mentally. How did you navigate that?

Jerome Harper:

It became part of our norm. It seemed like if my mom wasn’t going through a procedure, if I wasn’t, one of my brothers were. I remember my younger brother waking up after eye procedures, he had both of his lenses removed. He woke up totally blind and he was blind for 3 days.

We had to literally guide him around the house and support him in that. Or even being a young child and my mom going through heart surgeries and my brother and I having to help fix her lunch and breakfast and having family members over to help support us and making sure we eat and everything. That was big. Having a sense of community of people who understood and who cared, that was really big for us. On the emotional end, again, a lot of it was trying to push this to the back of my mind and say, “It does not exist. I am normal.” That was my biggest thing growing up. I want to be normal. Not realizing that, “Jerome, your circumstances don’t identify who you are. That no, you still have gifts, you still have talents that you contribute and add value to the world.” Of course, that came later on, but as a teenager, I just wanted to be like everyone else.

Kerri Fitzgerald:

Yeah, that makes a lot of sense. You talked about having community with your family members who experienced the effects of Marfan syndrome, but then you got in touch with The Marfan Foundation, and I have listened to some of your talks that you’ve given at events there and something that stood out that you said was about meeting people that were associated with the foundation. You said, “It was the first time I felt like I could be myself. It was the first time I felt like I could talk about all these things that made me feel like I was unique and different.” Can you expand on how these connections really helped you through?

Jerome Harper:

Yeah, absolutely. I found out about The Marfan Foundation after I went through my first open heart surgery. I was actually on campus as a senior at Morgan State University, and I went into cardiac arrest in Baltimore, Maryland, as a senior after being the first person in my family to attend college and everything. That was very challenging for me as well. But after that surgery, I remember waking up and saying, “I want better. I have to do better. I’m going to live. There’s more for me.” I started doing research and Google and everything. I came across The Marfan Foundation and I gave them a call. Then I learned that they had a mid-Atlantic chapter. I found my way in the community going to the conference in 2014 in Baltimore, Maryland. Here, there were other individuals with Marfan syndrome and related connective tissue disorders.

There I was able to be open, transparent, honest, and just overall vulnerable about my vision issues and being blind with the complications that come with being a young man and my day to day, not being able to do things that other young men can do. My insecurities about dating or my physical features or even certain things or being teased or bullied because of how I look. That was super important for me, being able to be vulnerable in that space and having others who could say, “Hey, Jerome, I agree.” Who could empathize with me and point me to resources. Here at the conference and with Marfan syndrome, I also was able to speak to doctors, some of the top doctors in the nation, and hear from their perspective and it was just an eye-opener for me.

I immediately went home and told my mom and my brothers about it, said, “Hey, we have to go next year. There’s this awesome group out there of people just like us.” The biggest takeaway was that they were still living their lives. They did not seem defeated. They did not allow what they were going through, the challenges with Marfan syndrome stopped them from living, from pursuing, from having vision for them for their lives. That’s where I was with me pursuing education and career and everything.

Kerri Fitzgerald:

That’s such an important sentiment that you share that I think so many people could find some hope and inspiration from that real choice to live and be present every single day. I love that you say that. For those who feel alone out there, whether they have Marfan syndrome or are dealing with some other health challenges, what advice would you give to them? How did you get from those teenage years where you were really struggling to now and you have this beautiful outlook on life and just living with Marfan syndrome?

Jerome Harper:

Yes, I would say make a decision to live. Make a decision that if you have breath in your body, because I was fully aware during that time that, hey, I’m blind in my right eye, I have limitations. That I have rods and screws in my back also bring more disability and limitations. Hey, I’ve just had 2 open heart surgeons and I have a St. Jude’s mechanical valve, but I choose to pursue an education. I choose to build a family; I make a decision. For me, those solid foundations was one, my faith. I believed that I can do it. As a Christian, I believe in Jesus Christ. It was also my family, the support that I mentioned from my mom and my brothers and external community members and family members. Also just having a vision for myself, because it allowed me to continue to pursue more, because while my situation, it was a reality, things that I was going through, I knew that I didn’t have to settle for it.

That’s what I would tell to continue to dream big while continue to put your hands and feet at work, continue to move your feet, continue to put your hands at work and continue to expand your mind. Because I knew after having those procedures, and all of this was before the age of 21 where I had the heart surgeries, the eye surgeries, the back surgeries, all through my formative years, I knew that, okay, I can’t be an NBA player anymore, so I’m going to go to college and be a scholar. But being able to be resilient, being able to alter and adjust and putting yourself in a circle around people who can help you do that, that’s been extremely important for me.

Kerri Fitzgerald:

That’s such an important message. You’ve talked about the physical aspects of Marfan syndrome, but there’s also the mental health aspects as well. How has community support and family really helped you tackle the mental health component of this journey you’ve been on?

Jerome Harper:

Yeah, if it wasn’t for family and support, my perspective would be different. It helped me have a positive perspective, whether it’s like I keep mentioning my brothers and my mom who have been through a lot of similar things, who was there to encourage me and me to encourage them, or The Marfan Foundation where I lost both of my brothers, and this is probably goes off course a little. But in 2017, just 5 weeks after being married, I lost my younger brother at the age of 23 to an aortic dissection. The same thing that I survived. But what came after that was that same week, my wife and I found out that we were pregnant with our son Josiah.

When we talk about mental health and the emotional capacity, here I am where I’m excited, because I’m having my first child, but I’m mourning the loss of my brother and I’m there trying to support my mom while being a new husband. I don’t know how to be a husband. I don’t know how to mourn my brother; now I’m a dad. But me saying, “Hey, I’m willing to see the beauty in this.” Even when my son Josiah was born, I had tears of joy, but tears of sorrow because I’m saying to myself, “He would never meet his uncle.” But one thing I could do was tell my son stories about my brother to honor him. I even gave my son’s middle name is Tejuan after my younger brother. To be honest, Kerri, that wasn’t the only time that happened, that happened in 2017. And then in 2021, my older brother passed from an aortic dissection.

That same month, my wife and I, we found out that we were pregnant with our now daughter Alani the same month. I’m like, “I’ve seen this before.” I mean, we could not be intentional with doing this. I’ve learned to say that, hey, yeah, there are negative things that happen in life, but there’s also positive things that I learned to choose and focus on those positive aspects of life. That’s what keep me moving forward. That’s what allows me to be able to have the courage to speak and to share and embrace others who may be going through challenges of trials. Like I said, I’ve seen this before. Again, those tears, it didn’t stop the tears of joy and its tears of sorrow at the same time.

But even with the Marfan syndrome, they have a grief and loss session the first Monday of every month. I’ve been attending that for 2 years now after losing both of my brothers in 3 years, within a 3-year span, and now being the only child and telling myself, “Hey, I have to be there for my mom and I have to be there for my mom, but also my young family as well, my wife with my young children.” That was a challenge. I had to realize that, “Hey, Jerome, you have to look out for you also, because if you don’t look out for yourself, no one’s going to be there to look out for your wife and children or for your mom.” I would say surrounding myself around other men who could pour into me and who can encourage me, older men, more mature, spiritually mature men, men who are married 20, 30 years, men who are already professionals, and just not being afraid to be vulnerable.

Because as I mentioned when I was 17, 18, 19, I would just keep it all to myself. People ask you, “Hey, how are you doing?” “Oh, I’m fine, I’m great.” I would go home and cry to myself because I didn’t know if I was going to live or die. Kerri, I have the St. Jude’s mechanical valve, like I mentioned, after my first heart surgery. For months I just could not sleep at night, because in the valve you keep hearing it tick, it ticks. To this day, it ticks and it sounds like a watch like the second hand on the watch. It just ticks, ticks. I couldn’t sleep, because I was scared that I would not wake up.

I operate in such fear of death. Now after having the support of family, friends and a lot of prayer and reading scripture and everything, I now see that ticking from my mechanical valve as a sign of life. Now when I wake up, I’m excited, because there was representation. “It’s another day, Jerome. You’re the solution to someone else’s problem out there that you are here another day for a reason and you have gifts and talents to share with the world.”

Kerri Fitzgerald:

I just want to say I am so sorry about the loss of your brothers. Your family has been through it seems unimaginable circumstances. I’m just so personally inspired by the positivity exude it. I don’t know that I could be so positive in the face of what you’ve gone through. I think this will really touch people who are listening.

Jerome Harper:

Even with me sharing my story, I’m so intentional with it now because I feel like I’ve had my mouth closed so much out of being insecure and being fearful that I’m going to be exposed, like, “Oh, he’s sick; he’s ill.” Even when I was in relationships and friends I had for 20 years, they knew nothing about Marfan syndrome. I didn’t know how to relate it to them because I was still trying to digest all that was going on and make sense of it.

I realized, Jerome, you can’t make sense of this, but what you can do is take it one step at a time and choose to focus on the things you can control. I started to speak differently. I started to look at myself in the mirror and speak life into myself and say, “Hey Jerome, I’m proud of you. You can do this. You might not be able to do those 10 things, but you can do this and you can do it very well. Let’s focus on that.” Those are the things that kept me going and gave me a sense of identity outside of Marfan syndrome and those challenges and help me to continue to say, “Hey, I can help. I add value to someone else.”

Kerri Fitzgerald:

Yeah, that’s a wonderful mindset that you have there. My Hero 360 is all about recognizing those who have embraced life’s challenges and turned it into something powerful and hopeful for others. You touched on this a bit, but what are some ways that you have not let your own obstacles define you and you’re defining yourself?

Jerome Harper:

I guess let’s think about some of the obstacles. Let me start even outside of Marfan syndrome, because even people who have Marfan syndrome or other genetic conditions, life still happens in other ways with family members, your environment, and everything. That’s another challenge, like you mentioned with being a teenager and everything, you battle so many insecurities and having Marfan syndrome is just another layer of that. But as I mentioned, I grew up in Washington, D.C., inner-city Washington, D.C., under-resourced area with a single mom. My father was incarcerated since I was a month old, and he was just released from prison last November, and I’ll be 35 on Tuesday.

When we talk about not allowing your situation and you to become a victim of that or statistic of that, for me, education was a big thing. Having higher education was like my Draw Four if you ever played UNO; it was my wild card. This was going to be my ticket to help me to be exposed to more, to a different group of people outside of my immediate environment of Southeast, Washington, D.C. But more importantly, I’ve never done things just for myself. It was also so that I could be of benefit and help for my family and my immediate community. I went to a community college, and this is a guy who I graduated high school with a 1.89 GPA. I realized it wasn’t because I wasn’t intelligent; it was because I battled so many insecurities from all of these surgeries and adversities that I had to overcome.

I was more focused on not being exposed and not letting people in than my academic studies. I went from less than 1.9 GPA to the Dean’s list in community college because of the exposure. I was around other people from different cultures, people who had issues as well. It was just part of my maturing as well. Then I continued on after that and pursued my Bachelor’s degree, and that’s where I had my open heart surgery at Morgan State as a senior. But even that was me not allowing my situation to take the best of me, to get the best of me and being able to be an asset to my community. Turning it back, even with Marfan syndrome, if you would’ve asked, if we would’ve had this interview 10 years ago, and you asked me, “Jerome, tell a little about yourself.” I would’ve told you all the negative things that happened to me, because I could not see myself apart from those things that had happened to me.

But now I’m in a position where I see things that, “No, Jerome, that was happening for you because you had to grow and develop into who you are now so that you could help other people.” I see that that was so intentional, that it did not kill you. It did not kill you mentally. It didn’t kill you spiritually. But actually what it did was put you in a position to say, “Hey, I consistently overcome this.” Because Marfan syndrome isn’t, oh, a thing of the past. I’ve overcome it. No, this is consistently, I’m still blind in one eye. I’ve had retina detachments in my left eye as well and had laser treatment. I still have the St. Jude’s mechanical valve. I still have the rods and screws in my back. It’s a consistent overcoming for me. With that being part of my day-to-day life and my walk, I’ve learned to be more vocal and vulnerable about that, simply the fact of being able to touch someone else.

Kerri Fitzgerald:

On that topic, you are continuing to pay it forward in your career. You work for a nonprofit, right?

Jerome Harper:

Yes. I am the Chief Financial Officer for the North Carolina Community Action Association. What we do is we work with local agencies throughout North Carolina that represent those more impoverished areas for people who may need housing, people who need food, who are in a food desert, whether it’s more in the inner cities or in those more rural areas. We provide a host of different services, including even health insurance. This ties directly, because I come from that environment, those under-resourced environments, and if it wasn’t for some of those resources, like the having vouchers and Head Start and things like that, it would’ve been even more challenging for us to survive.

I’m a product of those things, and this is how I use my financial savvy to pay it forward, like you mentioned before. I struggled for years. How do I take my skill set and my purpose and bring it together? I found that, and that’s the sense of joy. For me, I realized it is always been about serving others and being that person you wish you needed, the person that you didn’t know you needed. That’s my goal now in every aspect of my life.

Kerri Fitzgerald:

That’s incredible. It’s so great what you’re doing, and you can tell that you love your job too. That’s just such a blessing as well. When you love what you do, it really is such a positive light in your life. We like to conclude My Hero 360 interviews by asking what would you tell your younger self, knowing what you know now?

Jerome Harper:

Oh, wow. I would tell my younger self, “Keep going, keep going, Jerome, keep going.” First, I would probably sit my younger self down and we’ll have a Chipotle bowl. I love Chipotle. I’m not sure if you’re a fan or not.

We have the chips on the side, guac, and everything else. I would say, “Keep going. It is all worth the wild.” Another thing I would tell myself is, “Enjoy the moment.” Because as a young kid, I operated in so much fear, I was always looking to say, “Okay, the next thing, the next thing.” Even after I did graduate from college, I remember on my graduation day, I didn’t enjoy the moment because I was thinking about, “I don’t have a job. What am I going to do? I don’t have a job.” That was always my mind.

I would say, “Enjoy the moment.” I would say, “I’m proud of you.” That was extremely important for me to hear that. “I am proud of you. Continue to move your feet, continue to have vision for yourself, and continue to be courageous. It does pay off. You’re not alone in this.”

Kerri Fitzgerald:

Yeah. That’s wonderful. Thank you so much. You’ve been so vulnerable, like you mentioned, and just kind of authentically sharing your story today. It’s been a joy to listen to your message, because it is so uplifting and inspiring. Thank you for the impact you’ve made today. Thank you for joining us on My Hero 360, Jerome.

Jerome Harper:

No problem. Thank you so much, Kerri. I really do appreciate it.

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Connect with Jerome Harper:

Facebook: https://www.facebook.com/people/Jerome-Harper/100009553501568

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