Rockville Centre Family Walk for Victory

When I married my husband, Mike, thirteen years ago I had never heard of Marfan Syndrome. Mike was diagnosed with Marfan Syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person I quietly read about the disorder and filed it away in the back of my mind not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.
In 2006 we had our first child. I knew the risks and I diligently followed the orders of my obstetrician and my husband’s cardiologist. I gave birth to a beautiful baby boy and he was healthy as can be. He was monitored by a cardiologist for two years with no signs or symptoms of Marfan Syndrome. We loved being parents and decided to add to our family. We were blessed with a beautiful baby girl! Things couldn’t have been more wonderful.
I brought Emily in to the cardiologist at 3 weeks old for her first evaluation. I had put Marfan Syndrome in the back of my mind for so long that it was only a fleeting thought at this point in my life. Although I knew that any of our children would have a fifty percent chance of inheriting this condition, our son had shown no signs and I naturally assumed Emily would be the same. At this point in our life my husband’s health was stable and the dilation of his aortic root was unchanged for several years. Our son was seemingly unaffected. Even though Emily had some of the physical characteristics of Marfan Syndrome I had convinced myself that she did not have the condition so much so that I brought Emily to the cardiologist alone that day. My husband was home taking care of our son. In my mind this was just a routine follow up. I will never forget this day. The cardiologist looked down at the results of the echocardiogram and turned to me. She said, “Mrs. Kramer I think you already know.” At three weeks old Emily’s aortic root was already slightly dilated. My heart was broken and I was brought immediately to tears. I don’t remember much else about that day....I cried all the way home. I wanted to get it all out before I got home so that my husband wouldn’t see how scared I was. I wanted to be brave and strong.
As the years went on Mike’s health began to deteriorate and we went to doctor after doctor trying to understand what it was. I worried quietly. In 2012 we attended our first Marfan conference. This was a major turning point in our lives. We met so many amazing people and saw some amazing doctors. We learned that what we thought was status quo in terms of Mike’s health was in fact not the truth. Within four months of the conference my husband had open heart surgery and shortly following thereafter two spinal surgeries. I could no longer hide from reality. I was now face to face with this condition and I was scared to death. He had these surgeries in the course of one year. I cried all the time, I wanted to take all the pain away from him and I worried quietly about Emily having to go through the same. My husband is still recovering and we take one day at a time.
I can’t cry anymore...I can speak up. I can talk about Marfan Syndrome and I can help raise awareness and money in hopes that Mike and Emily along with all those out there with this condition will have a better life. This year we are participating in the Walk for Victory again. We don’t have any surgeries in the near future and we have an opportunity to get together with others in our community and let them know about Marfan Syndrome. We are supporters of the Marfan Foundation and are thankful for the tireless ways in which they pursue a cure. We look forward to the annual conference and continue to use the website as our go to resource for up to date information on research and general day to day problems.
For us, this foundation has provided a second “family.” We have found friendship and support which helps us move forward in our day to day lives. We are able to maintain hopeful that this foundation will find a cure so that Emily and Mike will live better lives. We want to ensure that all people that are affected with this condition are able to have the same experience.
We had a great turn out at our first annual walk on May 3, 2014 and all in all it was a very successful event. We as a community were able to raise in excess of $56,000 for the foundation! Truly amazing!
There is no way to fully express our gratitude for your contribution. We are continually inspired by the dedication and generosity of donors like yourself who answer the call to give again and again.
We want to get the message out:
People with Marfan syndrome need to be diagnosed to live with the condition. Otherwise, they are at risk of a sudden early death from a tear in their aorta, the large blood vessel that takes blood away from the heart.
It’s essential to know the signs of Marfan syndrome and seek an evaluation if you have these signs.
More information and support is available from The Marfan Foundation – marfan.org.

From the very bottom of our hearts – THANK YOU

Come Out and join us!

Saturday, May 02, 2015 at 12:00 PM at Syosset-Woodbury Community Park 7800 Jericho Turnpike Woodbury, New York

DONATE HERE - http://www.firstgiving.com/fundraiser/NicoleKramer/2015WFV-NewYork