8 Moms Run 100 Miles
“I am the mother of 5 kids, ages 16, 14, 13, 10 and 6. My two youngest children, Christian and Noemi, have a painful condition called Epidermolysis Bullosa (EB). Although we have been living with EB for 10 years now, this year has seemed to hit me harder than others. The older my little ones get, the more I realize how much they are missing out on. Not only are they missing out on the some of the simple joys of being kids, but they have to deal with the daily pain and the numerous procedures that come along with EB. As we are going through the day, I find myself saying to them repeatedly, '"You have to be brave". So when I saw the posting for the NYC Half Marathon on EB Research Partnership’s Facebook page, I realized that I couldn't constantly ask them to be brave if I couldn't do it myself. ”
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“I have participated in 7 races and accumulated 99 miles for Team EBRP. One of my all time favorite stories to tell about racing is from the 2017 Seattle Half Marathon. My son, Michael (RDEB), was waiting for me a few yards before the finish line and when I came into view he became so excited to see me and cheer me on he started running along the racing course so he could cross the finish line the same time as me. In that moment, I was so proud of him and myself. I was proud of him because EB is a painful disease and literally every step inflicts some level of pain. I was proud of myself because I am raising this little man that despite all he deals with can still show enthusiasm and take joy in the little moments. Until there is a cure, I will happily continue to rack up the miles, and hopefully dollars, to one day cross that finish line with an EB free Michael matching me step for step.”
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“The invite for the NYC Half Marathon landed in my inbox at just the right time. I was on a sabbatical from work and had recently decided I needed to recommit myself to exercising again. It felt great: my kids were in school, I wasn't working, I had the time!! Well, the sabbatical is over, my time is now limited, and the real struggle and sacrifice for training has begun. And I am grateful. I have never run a half marathon before. Back in my younger years, I did run, and I was fast. Now here I am, middle aged, out of shape, overweight, without any free time, but I AM DOING IT. I am doing it for my daughter, Clara. Who
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was born with a severe form of EB simplex and experiences pain every day. For my 5 year old daughter, I know it often hurts just to get out of bed in the morning, but she pushes forward and never complains. While I have a choice to push through pain, my daughter does not. EB has taken away that choice from her. I am so proud of her strength and perseverance, but I hate that she has to be so strong all of the time.
I am running for my daughter, Maya. She was fortunate enough to be born healthy, but being the sibling of someone with EB is not always easy. EB is such a rotten thief of both time and energy; I think all EB siblings know this all too well. I am running for my husband, Francisco. Kids change every relationship in every way. Raising a child with EB adds to those changes and stressors. Many are incredibly positive, others are hard and heartbreaking.
I am running to raise awareness. I am running to raise money. I am running with the hopes and dreams that there will one day be a time that a meaningful treatment, or even cure, will be found for my daughter and all others living with EB. I am running to show my kids that we can do hard things. That things worth doing in life, are not always easy. That hard work often does pay off, but not immediately. I am running, quite frankly, because I can. I know it will hurt. I know I will be so very slow. I am sure at some point during the race I will be reminded of what a crazy decision this was, but I will not quit...not until these hopes and dreams of mine are realized.”
I am running for my daughter, Maya. She was fortunate enough to be born healthy, but being the sibling of someone with EB is not always easy. EB is such a rotten thief of both time and energy; I think all EB siblings know this all too well. I am running for my husband, Francisco. Kids change every relationship in every way. Raising a child with EB adds to those changes and stressors. Many are incredibly positive, others are hard and heartbreaking.
I am running to raise awareness. I am running to raise money. I am running with the hopes and dreams that there will one day be a time that a meaningful treatment, or even cure, will be found for my daughter and all others living with EB. I am running to show my kids that we can do hard things. That things worth doing in life, are not always easy. That hard work often does pay off, but not immediately. I am running, quite frankly, because I can. I know it will hurt. I know I will be so very slow. I am sure at some point during the race I will be reminded of what a crazy decision this was, but I will not quit...not until these hopes and dreams of mine are realized.”
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“As a mother, there is no more horrible feeling than watching your child in pain. Most of the time, I feel powerless as all I can do is watch EB tear away at my son’s skin. But there is more promising research taking place than ever before and if there is a team that is helping to tip the scales on making life-changing treatments and cures a reality, then you better believe I am going to be a part of it.”
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I have run for team EBRP for the past 7 years. I am an EB mom that uses running as a vehicle for so many things. Running provides me the time to just be by myself and sort through this crazy life. It allows me to think of what I need to do during the day and the days ahead. It gives me time to forget, if only for a few moments, the reality that is EB. Running has also provided me the opportunity to raise awareness for a disease that too many people know nothing about. In the past 7 years, running for Robbie has brought an awareness to EB that might never have existed. I have been asked countless times during a race what EB stands for and who Robbie is. I am so grateful for those moments. While often out of breath, I love the opportunity to tell others about Robbie and how proud I am to be his mom. He inspires me everyday with his strength and willingness to lead as normal of a life as he can. His courage overwhelms me. Running for Robbie gives me hope.
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Hope that with all the awareness and funds raised there will be a cure: an end to all of his pain, all of the bandages and blistering. My family and I are so proud to be part of such an amazing team.
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"I wanted to run this race for my son Asher and others like him with EB. Being a part of this organization is so exciting for our family. EBRP is doing amazing things in the EB community and I'm proud raise funds to hopefully find a cure!
Asher has taught me and and others around him how strong we really can be when we dig deep. I've never met a stronger person than him. I've run about 5 half marathons to date. After having Asher, when I'm running and I'm ready to quit, I think of him and how he always moves forward, no matter how much pain he may be in, always smiling. He is an amazing person and I'm honored to be his mom. I'm hoping to see a cure for EB for him and the rest of his EB family. I'm training hard now to run this race strong in honor of Asher...my little superhero." |
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"I am inspired to walk the half marathon in honor of my son, Ezra, who has RDEB and for all who suffer with EB. I want to walk for those who lost their battle with EB this past year. I want to connect with the EB community again and do what I can to raise some money that will help find a cure or treatment someday soon. I can't lose hope, although some days I do. But, for me, this is about giving back to this community the best that I can and makes me feel like I am making some contribution to a cure for my son. I am a little nervous about the half marathon, since I don't have much time to train. Even though I am walking, this is my first attempt at 13.1 miles of it! I am honored and excited to share this walk with my fellow EB moms, because I know with them, I am walking among some of the strongest and most compassionate mothers I know."
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To date, EB Research Partnership has raised $25 million to fund innovative research aimed at finding treatments and cures for EB. Over $1 million of that has been raised by runners from our NYC Full and Half Marathon teams.
For press inquiries or to learn more about the mothers participating in the 2019 United Airlines NYC Half Marathon, please contact Michael Hund at [email protected].
For press inquiries or to learn more about the mothers participating in the 2019 United Airlines NYC Half Marathon, please contact Michael Hund at [email protected].
