Boy with hemophilia climbs mountain for research

On Saturday, September 16th, a community of marvelous people will gather in the Camden Hills to climb Mount Batty. What is unique about this particular group of climbers is the common thread that binds them: These families all deal with a life-threatening bleeding disorder called hemophilia.

What is hemophilia? Well, imagine a row of dominoes, each one representing one of the thirteen factors in your blood. When you get an injury, those dominoes start to fall over in order to do their job. For my son, domino number eight doesn’t work properly, which screws up the flow of the other dominoes making a clot impossible to happen. So we give him an intravenous replacement factor through a port in his chest to help his body make the clots he needs in order to stop bleeding.

That replacement factor is crazy expensive. To put it in perspective, one unit of factor costs $1.00, which doesn’t sound terrible until I tell you that one dose is 1,000 units. If Finn falls over and bonks his knee, that could cost a grand to fix. We have insurance, but we still pay out of pocket co-pays, making our medical bills ranging between hundreds and thousands a month. Recently, we were able to sign up for a really cool program that covers those co-pay fees for us. Not all families are as lucky as we are.

To do something about this, we decided to participate in a cool project launched by the Hemophilia Alliance of Maine, which is a group of badass moms and dads who created a network of support for Maine families in the bleeding disorders community.

This Saturday, my oldest kid, Finn, will be climbing Mount Batty along with lots of other kids, as a part of Hemophilia Alliance of Maine’s HIKE4HAM17 to help raise funds for hemophilia research and community support. You can help by clicking this link right here and throwing a few bucks toward this fabulous cause.

100% of your donation is tax deductible. 100% of your donation goes directly to research and programs that support kids just like Finn. This past summer, we were fortunate enough to be able to go to Family Camp at Lake Winnipesaukee in New Hampshire. This camp is a week long adventure that lets kids run free and in the wild, the way kids should. Finn met other kids with hemophilia and for the first time in his life, he felt like a normal kid. This camp cost us a mere $125, making it affordable for us to attend. It was through donation drives like this one that made that happen.

To learn more about the bleeding disorders community (it’s pretty awesome!) You can click here. 

Thank you for your support!