The Bleeding Disorders Foundation of North Carolina is a great organization. Since Noah was diagnosed with hemophilia at only 2-days old, we have benefitted from many of their programs and services. Something special about the Bleeding Disorders Foundation of North Carolina is that the entire family can get support, even those who don't have hemophilia. When Noah was a baby, the Bleeding Disorders Foundation of North Carolina connected us to other families that also had young children with hemophilia. As parents, we learned how to raise a child with hemophilia without having to wrap Noah up in bubble wrap, even though all we want to do is protect him from getting hurt. While Riley doesn't have hemophilia, there are many opportunities for him to connect with other siblings who don't have a bleeding disorder, because being unaffected can be hard too. The Bleeding Disorders Foundation of North Carolina provided Noah's first MedicAlert bracelet for free. Because of the Bleeding Disorders Foundation of North Carolina, when we were learning how to give Noah his medicine at home, which is by an IV infusion, and we were struggling because it is so hard to stick your child with a needle, we were able to reach out to a community that could support and encourage us.

Noah is now 13 years old, and the support that Karl and I have received for years is something that Noah is now looking forward to. He gets to go to his first Teen Retreat this year with other kids who have hemophilia or other bleeding disorders so he can begin learning what he needs to know to grow up and eventually manage his hemophilia on his own! The event, and all events that the Bleeding Disorders Foundation of North Carolina holds are free, so families don't have to add the cost of registration, meals, or lodging costs on top of everything else that they have to deal with. Noah is also going to Washington D.C. this spring, to meet with members of Congress to tell them why they should support and vote for healthcare policies that protect people with hemophilia and many other conditions.

So, what does it mean to have hemophilia? Most likely, unless you are part of the bleeding disorders community, you don't know much about it. There are only 30,000 people living with hemophilia in the United States today. When someone has hemophilia, they are missing an important protein in their blood called factor. In Noah's case, it's factor 8. Without factor, you cannot form a clot when injured, so you continue to bleed for a long time. While cuts can sometimes be a problem, the bigger issue is internal bleeding into joints and muscles. Internal bleeding can happen anywhere and for no reason at all. While we usually think of injuries happening because of trauma, for Noah, they can also happen for no apparent reason. That means, that sometimes Noah could just be going about his day, and he can develop a painful joint bleed. And for minor things that happen, like twisting your ankle, instead of hurting for a little bit and then being better, for Noah it could lead to a painful bleed.

Noah's medicine allows him to be a very active kid. He likes playing soccer, and also playing too many video games. While the medicine he gets lets him do most of what other kids can do, we always have to be watching for internal bleeds, especially his ankle, which gives him the most trouble.

We are so lucky to live during a time of new and improving medicines for hemophilia. Noah's medicine, called factor, is given through an intravenous infusion. We have to stick him with a butterfly needle and infuse his factor. Noah has also learned how to do this, and most of the time, he gives himself his own infusion. Noah gets this to prevent any bleeding and any time that he gets hurt. He just started a new factor that only needs to be infused once a week! When we started his infusions when he was a toddler, he needed to be infused 3 times a week, so it's a big improvement. But this medicine is very expensive. Each month, his medicine costs about $30,000! Luckily, we have insurance that covers most of that. One of the things that the Bleeding Disorders Foundation of North Carolina does is to make sure that insurance companies include factor in the medicines that they cover, that we can afford it after what insurance covers, and that Noah can see his specialized doctors.

We are raising money to support the Bleeding Disorders Foundation of North Carolina so they can continue to improve the quality of life of people affected by bleeding disorders with education and support programs, advocacy for healthcare, and other services that they provide the community.

Whether you are able to make a donation or join our team, thank you for your support!