Today is World Hemophilia Day! Over the past year, I’ve gotten to know an incredible group of people within the bleeding disorders community. Most are parents of children with hemophilia or von Willebrand’s disease, some are guys in their 20′s and a few are “executive” (code for older) members like me in the hemophilia community.
This past year has been one of the roughest of my life as a result of my hemophilia and health problems. Many of my friends in the community stepped up and have offered me so much love, support and friendship this past year. We’ve become a family. We talk about things in our lives with one another just like biological families do. It’s been wonderful for me! I’m so grateful to have found them all.
I asked members of the bleeding disorders community to send me pictures of themselves or their loved ones living with a bleeding disorder. As a token of my gratitude, I’ve made a video of those pictures to help show life with a bleeding disorder and living life DESPITE a bleeding disorder.
Happy World Hemophilia Day 2011!
Enjoy!
©2011 HemoHijinks/Ryan Rotenberry
This video can also be viewed at:
I just watched the video on hemophilia and it is amazing…My grandson Cole just turned 2 yrs. old and he has hemophilia…he is in the video in the Halloween cow outfit (10:18 into the video)…we knew nothing about hemophilia until he was diagnosed with it…odd that the hospital didn’t know why he was still bleeding from his circ., but sent him home. When he was still bleeding a week later, to another hospital we went, took blood, called in a urologist, geez…circumcized hil again and sent us home. Another week later still bleeding and a 3rd. hospital, more blood taken and no one knew. They too wanted to send my daughter and son in law home with Cole..But my daughter Wendy refused, so they sent him to MUSC, and within 24 hours we were told he had hemophilia. Honestly we were dumbfounded. But we became educated through MUSC and the hemophilia foundation. Sad that people don’t know about it and how it is life changing for the rest of our lives. I work in the dental field and in 30 yrs. I can only think of 3 children that have it, and they do not have the most severe like Cole has. And the cost, thank God for insurance, but unlike most states, South Carolina is very poor and Cole is not eligible for medicaid. Seeing as how I do work in the dental field and see medicaid children everyday, it does make me question how some people are on it. I was told by the medicaid office that hemophilia is not a disability, but ADHD is, yeah…ok….but more important..thank you for this beautiful video…our family has been so blessed by Cole and we are proud that he has a “starring role” in this wonderful video….Thanks for all you do and know there are many of us who appreciate all you do…Tim, Wendy and Cole were honored to have been invited in November to the National Hemophilia convention in New Orleans…They learned alot and enjoyed being with other people who understand. Love, Sheri
Thanks so much for your kind words about the video! I’m glad you liked it. Thanks also for reading my blog! Please keep in touch!