Thursday, May 27, 2010
Forty years ago today, a baby boy was born. He became the third child and the second son in his family. Hours after he was born he was given a vitamin K shot in his little leg, which immediately swelled. Shortly after, he was diagnosed as having severe Hemophilia A.
As he grew, he and his family learned the hard way about the painful and devastating affects of living with hemophilia. As a toddler with constant bruises and black eyes from the normal bumps and falls of a child learning how to walk, they received unwelcome comments and stares from strangers. As a youth, who was often seen using crutches for a day or two to get him through an ankle or knee bleed, he received remarks like, "you're such a faker" from his peers. Trying to hide joint bleeds from his parents, who could not afford the enormously expensive medication to treat his bleeds, he suffered through many long and painful nights with a swollen, throbbing knee or elbow- whichever joint it happened to be that day.
During those years of untreated joint bleeds, the damage became evident. The once soft, round knee was replaced by a bumpy, bony structure. His elbow became fused from the many times of keeping it bent and held close to his body. The range of motion in several of his joints decreased year after year.
Two knee surgeries and an ankle fusion later (with another on the way), he has not let hemophilia slow him down. In fact, he has not only learned to live with this bleeding disorder, but has created a life around it. Many years ago, after taking business classes while working towards an MBA, he decided he wanted to start his own hemophilia home health care company. He wanted to create a company where he could help others who lived with this same disorder and in some small way, make their lives better.
And he definitely has accomplished what he set out to do. He not only supplies medication for many hemophiliacs, but he employs several people who are personally affected by this disorder. Because he knows how important a good education is for people who have hemophilia (a non-manual labor job with good insurance is a must) he has set up a scholarship fund to help with the costs of education for those in the bleeding disorder community. He helps patients with insurance needs, nursing needs, and emotional support. He is one who is looked at in this community for his compassion and understanding towards others.
And so, on this day, I want to celebrate the life of an amazing man who I get to call my best friend, my support, my husband.
Happy birthday Erik! I am so proud of you and all that you have accomplished in your 40 years. You have taken something that could have slowed or driven you down in life and have created a career where you get to make a difference in the lives of people who you are connected to- your blood brothers.
I admire you in so many ways- your determination, your drive, your compassion, your witty sense of humor, and your sharp mind. I admire you for taking your disorder and choosing to live your life in spite of the obstacles that were put in your way. I have never once heard you complain that hemophilia was your burden to bear in this life. The pain that you live with on a daily basis would cause many to complain- but you never do. You just keep pushing on- and for that, I love you. Look what you have done your forty years! I can't wait to see what happens next! I'm honored to be by your side and to share in this journey with you.