Hemophilia B is a hereditary bleeding disorder caused by a lack of blood clotting factor IX. Without enough factor IX, the blood cannot clot properly to control bleeding. This can cause spontaneous joint and muscle bleeds as well as painful deep tissue bruises. When Kalvin was 4 days old our lives were turned upside down!! We were told that our sweet baby boy had Hemophilia B severe and not to look it up online...a doctor would be in to talk to us in a few days...We were scared, lost, and completely felt alone. We had experienced NICU nurses that had NEVER taken care of a child with hemophilia. We didn't know who to turn to or how to find answers. While in the NICU we had a visit from an amazing person from the Colorado chapter of the NHF that opened the doors to the hemophilia world and all the amazing opportunities that were available. For the first time we were not alone! We have met amazing people and have made so many wonderful memories that would not have been possible without the chapter. Below is a list of all the things we are able to do because of this amazing foundation!!
National Conference in Orlando Fl.
Washington DC to advocate and to discuss health care issues
State Advocacy Days
When Kalvin gets older he will be able to go to camp to learn how to self-treat. He will have the opportunity to receive scholarships and to become a leader and mentor in the community, if he chooses to do so. Below are a few facts to help put into perspective what Hemophilia means to many in our community, and why we need your help!!
Kalvin receives weekly infusions of a factor replacement medication to help protect his joints and muscles. The medication cost $4.34 a unit and it's 100 units per kilo. Kalvin's preventive infusion is $7,161 per infusion. This does not include the additional infusions needed for injuries.
Kalvin's medication costs is on average $22,000 every three weeks.
This does not include the office co-pays, emergency room visits, and hospital stays that occur due to bleeds.
In his first three months of life we had over 1/2 a million dollars in medical bills
For the last two years we met our out of pocket maximum of $6,000 by April
Because of the support of the Colorado chapter of the NHF hemophilia does not consume our lives, we don't have to worry about maximum lifetime out of pocket limits, finding new jobs every two years to ensure Kalvin has insurance, and how we are going to afford his medications.
*We are able to focus on our son, not the financial burdens of a serious chronic illness.
PLEASE register and join our team, if you can't make it, please consider making a donation. Any amount will help!
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."