Soren was diagnosed with a genetic bleeding disorder, Hemophilia, when he was just 2 months old. Since this discovery, Tim and I made a promise to do whatever we can to give Soren the most normal life possible and I have to say that at 2 years old now as an active toddler, he has exactly that! We have successfully performed prophylaxis, a proactive infusion therapy where Factor VIII (the protein Soren is missing in his blood) is injected through his port 3 times a week, at our home for 1.5 years now! In addition, the support and education we have received through the clinical staff at the HTC, other Hemophilia families, our friends, and our own families has given us the tools we need to make Soren’s life like any other 2 year old.
One of the things that allows for this “normal life” for Hemophilia kids is the NHF summer camp! We want all hemophilia kids to have the opportunity to go to this camp so they can learn how to manage their condition and where they can connect with others that have similar life and health challenges. Children with very rare bleeding disorders can often feel alone and camp helps them recognize that they have a support system of peers, doctors, nurses, social workers, and mentors that are there for them and can enjoy an activity that other kids without a bleeding disorder get the opportunity to do without thinking twice. We need your donations to make that happen!
Soren’s Bleeding Busters Walk Team raised the MOST amount of funds for the Colorado Hemophilia Camp last year and we want to do it again! We need YOUR donations to do that again! We would also appreciate those who live in Denver to come out and walk with Soren on Saturday August 25th at Sloan's Lake.
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."