On September 16th, I will join hundreds of others to help people living with various types of bleeding disorders by walking in the 2017 Hemophilia Walk.
A year ago, I had no idea what Hemophilia or Von Willebrand was. A few years ago, I started to notice many unexplainable bruises on my son, Jonathan. After bringing it up to his pediatrician I was told It was normal and that all kids experience bruising. However, his bruising seemed worse than other bruises I had seen on other children. I started to hide his bruises for fear of what others would think could be happening at home. Last summer, his pediatrician finally listened to my concerns and agreed to test him further. A few days later he was referred to a hematoligist/oncologist and was officially diagnosed with Von Willebrand Disease. Shortly after, he had his first serious spontaneous bleeding episode. My wife had to immediately go on family leave to properly care for our son and take him back and forth to and from the hospital. Von Willebrand Disease is a genetic bleeding disorder that prevents the blood from clotting normally. Jonathan suffers from spontaneous bleeding episodes, heavy bruising all over his body, pain from internal bleeding, swelling and GI problems. If you know Jonathan, then you know how brave he is and how full of life he is. Honestly, many have no idea that he gets sick so often. You can't tell by looking at him. He is such a strong and happy kid.
Our family is blessed to have found an amazing team of doctors who handle all his medical conditions as well as his bleeding disorder. Also, we have found a wonderful support system within our local Hemophila chapter. We try to educate ourselves as much as possible, participate in the events offered by BDAI, and be advocates for Jonathan. His bleeding disorder might be a life-long incurable condition but that will never become an obstacle to him living a happy and healthy life. We are positive that Jonathan will grow up with safe adequate medication that will allow his blood to properly clot.
If you are free on 9/16/17 come join us in Lincoln Pk. Jonathan would love to see you there! If you can't make it you can still be part of Team Lightning by joing us as a virtual walker. You can also support our fundraising efforts by sharing this link and donating https://hemophiliawalk.donordrive.com/index.cfm?fuseaction=portal.fundraisingPage to as many people as you can inspire to donate. No contribution is too small! Every step does make a difference in the lives of people affected by bleeding disorders. THANK YOU in advance for your support and together, we will make a difference.
Team Ligthning (Rose, Patrick, Julian and Jonathan)
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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."