Team DOUBLE T is proud to participate VIRTUALLY in our 4th Bleeding Disorders Walk - a fundraising event to support the New York City Hemophilia Chapter and the National Hemophilia Foundation. Inherited bleeding disorders are a life-long condition. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.
As you know, ever since Toby was diagnosed with severe hemophilia at 8 months old we have been active in the Hemophilia community. Since it doesn't run in our family, we thought it was important to create a network for Toby and Thomas that included people, education, and support. Every dollar goes back into our community to fund educational programming for families like ours living with a bleeding disorder.
Since last year, Ryan and I have been giving Toby and Thomas their factor replacement 3 times a week - Toby even started pushing himself! This has been such a blessing during these uncertain times that we are in control of the boys health without needing a nurse to come to our home or multiple trips to the hospital. Everyday they ask if it’s factor day (because the get their iPads) and Toby is starting to realize not everyone has hemophilia and gets factor. When people ask about his cool band aids, he tells them he has hemophilia and factor makes him strong and brave :) It's part of life for them and we choose to be grateful for the access to medication, and do our very best to let the boys be boys and hemophilia be something we manage.
We hope you join us for our first VIRTUAL walk. Let's celebrate the support network we have for Toby and Thomas, our little heroes.
You can also support my fundraising efforts by forwarding this to as many people as you can to inspire them to donate as well! Every step does make a difference in the lives of people affected by bleeding disorders.
Thank you friends and family for your continued love and support. It keeps us going, keeps us fighting, and keeps our hearts full. We are so lucky to have all of you.
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."