What is Hemophilia: Hemophilia B is a hereditary bleeding disorder caused by a lack of blood clotting factor IX. Without 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.  

Why We Walk: 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! Here are a few of the activities/events that we have participated in over the last 9 years. 

• Family Camp
• Education Days
• National Conference in Orlando Fl.
• Washington DC to advocate and to discuss health care needs
• State Advocacy Days
• Women's Retreat
• White Water Rafting
• Hemophilia Camp 
• Rock Climbing

Last year was a very special year. It was the first time Kalvin was able to go to Hemophilia Camp. He was so excited to be there with his hemophilia family. We dropped off a child who hated hemophilia and everything that came with it. Infusions took anywhere from 30 min to 1 hour and usually ended with tears. We spent several hours in hospitals trying to find veins and weekly car trips down to Aurora for infusions.  When we picked him up, he was a completely different child. He looked at Troy and I and said, "I know how to do my own infusions, and I am going to do them on my own" From that day on he has had control of his infusions. In March we celebrated his 100th peripheral infusion. Now we do infusions at home, and they are done in less than 30 min. He is showing his friends how to do infusions and is more confident about who he is and what hemophilia looks like for him.  I know that without the community, education, and support of the NHF we would not be the family we are now! 

I cannot express how invaluable camp is for this community! This walk and the donations received ensure that brave little boys can grow up knowing that they can take care of themselves. I'm not sure if I will ever fully grasp what that means for Kalvin or any child with Hemophilia. 

I can say as parents that Camp means the world to our family. We have a brave little boy that is learning to live without limits. 

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 costs $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 on average $30,000 every three weeks. 
• In his first three months of life, we had over 1/2 a million dollars in medical bills 
• 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 can focus on Kalvin, not the financial burdens of a serious chronic illness. 
• Our team is committed to raising money to support those affected in our community and raising awareness of the urgency to find treatments and a cure. Please consider joining our team for the Unite For Bleeding Disorders Walk or choose a team member from the list and donate to our cause.

PLEASE register and join my team, if you can't make it, please consider donating. Any amount will help!

Thank you!!