Family & Friends,
As many of you are aware, almost four years ago our family's trajectory took a sharp turn when our grandson, Teddy, was born with Severe Hemophilia B. This life long genetic mutation is passed down in families on the X chromosome and is often silent until it is paired with a solitary Y, as was the case with Teddy, who was the third child in his family and our fifth grandchild, and the first person to show the signs of hemophilia. Since Teddy's birth the women of our family have been tested, and I appear to be the origin of our hemophilia gene. Of my four daughters, two are carriers, one of course being Teddy's mom. Teddy's sister has also been identified as a carrier, so three generations have been touched. My other carrier daughter will be faced with some big decisions as the hemophilia mutation occurs 50% of the time.
New England Hemophilia Association (NEHA) was the organization that sustained Teddy's mom through that first super difficult year. It was, and remains, a place of support and contact with other families who live with the reality of hemophilia. There are only 20K hemophiliacs in the US, so being able to speak with others who deal with hemophilia daily is a gift. NEHA connects the New England families. NEHA also provides 1x Emergency Assistance to those in financial need, advocates with state legislators to keep insurances affordable, funds a summer Family Camp and donates to research which will, hopefully, find a cure to this disorder.
Each year our family walks in the UNITE FOR BLEEDING DISORDERS walk, gathering with others who have been similarly affected. We raise funds so that NEHA can continue to provide for these very special families.
Would you help me achieve my fundraising goal?