Every year, we ask our friends and family to help sponsor our Spring Walk for Bleeding Disorders. As most of you know, our son Evan has a bleeding disorder called hemophilia. Hemophilia is a rare disease in which the blood inside the body does not clot properly. Having hemophilia doesn’t mean you bleed more often; it just means that it takes much longer for your blood to clot. This isn’t as much a concern for routine scrapes and cuts as much as it is for internal bleeds in the joints or head. Those types of bleeds are less obvious and can lead to arthritis or brain bleeds.
Evan has a severe deficiency of a protein factor in his blood that you and I take for granted. A normal range of factor in a person without hemophilia is anywhere from 50 - 150%. Evan is classified as a severe hemophiliac since his level is less than 1%. So that his body can function normally, he is infused with a synthetic protein factor every 48 hours which boost his levels into the 100% range. This allows him to be the active, outgoing, funny child that he is. He rarely complains about being “poked”. Instead, he smiles and plays while he is infused. Sometimes he even helps. He is the bravest, toughest person that we know (at only four years old).
Beyond the infusions, hemophilia impacts Evan's life in a variety of ways. He currently has a port placed in his chest so that the infusions are easier to administer. Because he has a port, when he gets a fever he is subject to blood culture testing, IV antibiotics and hospital stays until the fever is gone. This is done so his doctors can be sure there is not an infection in his port that may spread to the blood. Children like Evan are also precluded from engaging in certain physical activities like playing on the monkey bars at school or contact sports like football or wrestling. Even doing simple things like going on his annual overnight canoe trip can be cumbersome because of the extra factor and infusion supplies that he needs to have on hand should he get hurt.
So where do your kind donations go? The money that is raised for the Spring Walk for Bleeding Disorders helps the Hemophilia Foundation of Greater Florida fund many programs. For example, it helps families in need who have difficulty paying for the costs associated with this extremely expensive disease. Your support also helps to fund advocacy on behalf of the Hemophilia Community and research for innovative products to treat hemophilia as we continue to search for a cure. It helps to send children to a week-long camp where they can relate to other kids with their disorder and even learn to self-infuse...someplace we will be able to send Evan when he is older. Finally, it helps to send families of younger children to go on a weekend retreat to bond with other families that know the challenges and triumphs that come along with having a child with a bleeding disorder.