I’ve lived in Denver, Colorado my whole life other than when I attended school at Doane College in Crete, Nebraska. I was diagnosed with severe hemophilia B at birth and it has obviously played a dramatic role in who I am and my life path.
I wasn’t really into the outdoor world much as a child despite living in the outdoor mecca that Colorado offers. I learned how to ski and hike when I was young but baseball was my obsession. Baseball was my life growing up and as the game became more competitive I had more challenges with my hemophilia, one of which was self-infusion. This might sound crazy to those in the hemophilia world, but I hate needles. I’m terrified of them. I loved baseball so much I knew I had to get over this hurdle. Although I learned to self infuse, that challenge still exists today.
College ended, and with it, so did baseball. So much of my identity revolved around playing baseball. When my baseball career ended, I felt lost. Fortunately, I turned towards the mountains to find myself again. I spent a great deal of time in the mountains with my uncle, trying new sports and loving them all! The outdoor world fulfills me in many ways. I especially love the challenges that climbing provides. It’s not only the physical struggle to push my body farther than I can imagine but also the mental challenge. Being in the mountains doesn’t always mean I’m comfortable. You get up crazy early, it might be cold or windy, it might be snowing or raining, and your mind wants to tell you it’s stupid to be outside but somehow you push through. The reward; spectacular sunrises, epic and seemingly endless views, the simplicity and peacefulness of the wilderness, and the satisfaction that you achieved your goal.
I heard stories of climbing big mountains from my uncle and had dreams of my own epic expeditions. While working at the University of Colorado Hemophilia Research Lab I was offered the opportunity to travel to Kenya as part of a humanitarian mission to help those with hemophilia. With that trip set in motion I decided that I wanted to attempt Kilimanjaro, the highest peak on the African continent. I was nervous and scared to travel to the developing world and climb such a big peak but I had to try. That trip changed my life forever. I saw hemophilia for what it really is, a horrific disease that still kills many people. How could I not be compelled to do more?! I headed to the mountain with a new goal. This climb would be about seeing how far I can push myself personally and bringing to light the struggles of those I met in Kenya.
Climbing Kilimanjaro was difficult. I learned a lot about myself and my resolve. During my descent from the summit I decided to commit myself to the goal of climbing the Seven Summits, the highest peak on each continent. Not only did I want the physical and emotional challenge, I wanted to use my journey as a platform to help change the lives of some of my blood brothers that struggle around the world. As of March 15th, I climbed five of the Seven Summits: Mt Kilimanjaro, Aconcagua, Mt. Elbrus, Denali, and Carstensz Pyramid and will continue this quest over the next several years.
As my story evolved I have gotten more involved in the hemophilia community. I am proud to say that I serve on the board for Save One Life, an international hemophilia non-profit, and volunteer in my local community with the Colorado Chapter of the National Hemophilia Foundation.
Throughout all of my experiences I want to inspire others to strive for their goals and take small steps to make them a reality but at least try. I also want to bring our worldwide community together to make hemophilia care more equally provided throughout the world. I want to teach our community empathy towards others struggling and exemplify through my own actions and community involvement - the change our community, and others like ours, desperately need. I also want to share my connection to the outdoor world. I started that mission with the Colorado Chapter of NHF through the program Backpacks and Bleeders and I’m so proud of the program.
I can’t wait to continue this amazing journey and keep sharing it with you!
Always remember, whatever your excuse is, it’s time to stop believing it!
I started my blog, Adventures of a Hemophiliac, just before my first climb in my Seven Summits Quest. I started it as a way to document my trip for my close family and friends but after my successful summit and life changing trip to Africa, I thought I should try and share more. Life with hemophilia has its ups and downs and I think it’s important to share it all.
The goal of my blog is to be a forum to share personal triumphs, struggles, and spread awareness about hemophilia. I also want to be able to encourage people to pursue their passions in a smart and educated way through the #playitsmart campaign. This campaign will highlight people in our community and from other communities that have overcome unimaginable obstacles to follow their dreams and find their passions.
For those of you that are just learning about hemophilia, I’ll give you the brief rundown. Hemophilia is a rare genetic bleeding disorder caused by the deficiency of clotting factors VIII (hemophilia A) or IX (hemophilia B). Hemophilia is characterized persistent bleeding into joints, muscles, and soft tissues. It can be corrected with replacement of the missing factor. Without clotting factor, bleeding will continue and lead to excruciating pain, joint damage, and potentially death. Thankfully, in the developing world we have access to treat this disorder and the crippling effects it can have. Don’t get me wrong, we still have painful bleeding episodes but they can be controlled and minimized with our IV treatments. Sadly, 75% of people in the world living with hemophilia have limited or no access to clotting factor.
Unfortunately, the medicine that is so crucial for us can sometimes become ineffective in individuals, this known as an inhibitor. The diagnosis is devastating and treatment is extremely limited requiring infusions every 2 hours or massive doses with little effect. In developed nations, this complication has become the most pressing issue in our hemophilia community.
It’s also very important to note that hemophilia isn’t the only bleeding disorder. Those that live with conditions like von Willebrand's disease, platelet defects, or afibrinogenemia, to name a few, have the similar struggles as those with hemophilia. It’s very important to remember these disorders and support them equally.
For those of you who do know about hemophilia, you know it’s way more complex than this. Instead of rewriting all the info out there check out the links on the right to get more information about hemophilia and other bleeding disorders.
Giving back to the community and supporting programs that help others with bleeding disorders is incredibly important to me. There are so many amazing organizations out there with incredible missions and goals that I believe in and love working with.
Save One Life is an international nonprofit that aids those with hemophilia in developing countries. They offer many programs, but the main focus is to provide monthly sponsorships to individuals suffering from hemophilia and who live in extreme poverty. Sponsorships can be used in many different ways with the goal to make a positive impact on recipients lives. Save One Life also provides scholarships to help continue the educational careers of recipients, Micro-Enterprise Grants to help them create small businesses and sustainable lives, and funding for children’s camps.
I’m proud to also say that I serve on the board of directors of this organization and that many of my climbs function as fundraisers. As of March 2015, I have raised $45,000 for the organization through my mountain climbs and hope to raise over $100,000 by the end of 2017.
The Colorado Chapter of the National Hemophilia Foundation (CONHF) is my local hemophilia chapter. I love being part of this community. The director of the chapter, Amy Board, was the first person that got me involved in my local community and has been an amazing influence and friend within my journey as a person with hemophilia. I experienced camp for the first time when I was seven and after a 12 year hiatus have since enjoyed working as a guide, camp counselor and mentor for the younger generation throughout the week.
During my time as a board member at CONHF, I also co-founded the program Backpacks and Bleeders in our community. This program educates our entire community on how to enjoy the outdoors and explore our incredible surroundings in a smart and positive way. My favorite program is our 14er climb, a 14,000ft mountain, here in Colorado. It’s amazing to see our community members complete such a difficult task and watch their sense of accomplishment unfold at the summit.
Alaska is an incredibly special place for me. Climbing Denali in 2014 was the hardest and most memorable experience of my climbing life. After the mountain summit Denali, I was able to be a counselor at the Alaska Hemophilia Association's camp. The camp is an amazing place where kids become empowered with their hemophilia. It fun to see how the kids grow so much over such a short time and how we as counselor can shape that journey, I been fortunate to be invited back and look forward to it every year. The Alaska Hemophilia Community has always been so welcoming and I feel like they are my second hemophilia family.