Our superheroes Noah and Ivan were diagnosed with Hemophilia A Severe. Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally. The main symptom is uncontrolled, often spontaneous bleeding. Internal bleeding into the joints can result in pain, swelling and, if left untreated, can cause permanent damage.
Noah was diagnosed at birth and he takes his factor as needed. Ivan was diagnosed over a year ago when he had a spontaneous bleed in his right calf. After his hospital stay and talking with his doctors, Ivan is now infusing factor 3 times a week through a port in his chest. Our hope is that one day Noah and Ivan would not have to infuse and that there would be a cure.
Even though Hemophilia runs in the family, it was still a very scary time for our family. My uncle Fito also had Hempohilia A severe and growing up we saw the struggles he went through. At that time, treatment for Hemophila wasn't as available as it is now. Currently, there is no cure for hemophilia. While treatment exists, it is costly and may require lifelong infusion of replacement clotting factor that is manufactured either from human plasma or using recombinant technology.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to prevention the complications of these disorders throught education, advocacy and research. By joining us on this walk and/or making a donation to NHF, we can continue these efforts in the hopes of one day there will be a cure for Hemophilia and that are boys will not have to infuse or live in pain.
Ivan and Noah are such brave boys and we want them to know that we are with them every step of the way! So, please come and join our team to walk for Hemophilia and/ or make a donation to support Ivan and Noah and in memory of our uncle Fito.
Thank you so much and we appreciate your participation and donation.
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."