Hope For Hemophilia

My name is Jonathan and I want to update you on some exciting things happening with our non-profit Hope for Hemophilia.  I am pleased to announce that Hope for Hemophilia is actively helping hemophiliacs and their families in times of crisis through financial assistance, education and practical help.

Close friends who love us started Hope for Hemophilia for my family. They saw the great need we were in due to my severe bleeding and the numerous surgeries that I have had over the past five years. But, I did not want to be the only one receiving such an act of kindness. Thus began a mission to give hope to anyone affected by hemophilia.

Every hemophiliac has his own story.  Although some of the challenges we face are similar, each one of us is unique. I am 32 years old and have severe Hemophilia A.  I am married to the love of my life, have four kids, and I am a Financial Advisor.

I have lived all of my life with hemophilia, which has deteriorated both of my ankle joints to the point of fusion and completely disintegrated my right elbow. Although an accomplished musician, I have been limited in my ability to play piano or guitar since my elbow was replaced.

Though excelling in my profession, my relentless bouts with hemophilia affect me everyday. In and out of the hospital, in and out of wheel chairs, always in recovery – this has been my reality. In addition to enormous medical bills, providing for my family has been extremely challenging. My monthly medical insurance premiums alone are exuberant, not to mention normal household expenses with four small children.

To most, these realities might seem completely overwhelming, but this is not the end of my story. I firmly believe that wrestling with hemophilia has given more to me than it has taken away. I have a real passion for the hemophilia community and am constantly looking for ways to give back.

I am excited at what the future holds for Hope for Hemophilia. Lately we have been able to help several hemophiliacs around the country. We are thankful that our name is getting out into the hemophiliac community.  The more our name gets out there, the more opportunities we have to bring hope to hemophiliacs and their families.

Hemophiliacs are a small percentage who fall through the cracks, leaving major gaps in care and ability to get help.  If you are someone quietly in need, we want to join with you and help bring hope to your situation.  Please visit our website at www.hopeforhemophilia.com or call us at 1-888-628-4243.

One Response to “Hope For Hemophilia”

  1. I am a mom to a 5yr. old boy with hemophilia, I am uplifted when I hear stories of men that are positive, well educated and doing so much for the upcoming generation. As a mom we just want to do the best we can for our kids, but when you have a kid with a disorder you can only imagine how much more we worry and want to fix everything. It motivates me and helps me stay positive and know that he can live a normal life.

    Thank you for your story.

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