Matt and Mandi Chase, Peggy Metzgar, Amy and Chris Boggs with Harlen
The timing was impeccable. I am newly retired and a brand new grandmother, both exciting and challenging. Even though I now find myself on a fixed income, I have an adorable grandson who has opened my eyes to the reality of hemophilia. I need to do what I can as much as I can. I became a National Hemophilia Foundation monthly donor. I am starting small to get the feel of my limited income, but plan to build it up in time. I have the money coming out of my checking account automatically each month, so easy to do.
I tell everyone that if you want to see change, you've got to commit. It's imperative to determine your priorities in life. Even something small makes a difference. So if I want to see changes in hemophilia - and I do - I'm committed to my monthly gifts.
It all started when I met Harlen. Before then, the last time I thought of someone with hemophilia was 60 years ago. It was a boy at church. He was gone before his sixth birthday.
So when I learned that my daughter Amy and her husband Chris were going to adopt Harlen, who had hemophilia, my thoughts leaped right back. I heard that so much had changed since that short life all those years ago. As Harlen's grandmother, I was determined to do everything to see that he and every child like him could live the long, eventful life that my church-mate never had.
I started with being available for Harlen.
After retiring from teaching, Chris and Amy built onto their house, a place for me to live, and be part of the family. I am fortunate to be close and able to help babysit when Chris and Amy are working. Amy is a Doula - assisting with births and photographer, too. She has unpredictable hours and I can help with Harlen when needed.
Like you'd imagine, adopting any child requires lifestyle changes, but with Harlen's hemophilia we had to make some special adjustments. Infusions were hard when Harlen was first born, but the people at Stanford Medical Center were great. After a while they gave Harlen an infusion port. Now we infuse him every other day while he just sits in a Velcro holder and watches TV!
But Harlen's like any 20 month old: really active. What I used to do with my kids won't always work with him because of his condition. As I look ahead, I know he'll keep me on the go - and that includes joining my family on the Bay Area Hemophilia Walk; he didn't come with me. I went with them.
So much has changed since I saw the boy with hemophilia at church almost 60 years ago. If he were around today, he'd have a future - like Harlen does. I want everyone to know that a brighter future for Harlen and anyone with hemophilia starts when people like us stand firmly behind NHF. Volunteering, Walks and gifts - especially monthly gifts - makes sure that research and treatment can get the funding they need.
I'm so thankful that Harlen came into my life. I don't know what I would do without him. He has a wonderful circle of family and friends that feel the same way. Chris and Amy feel so amazingly blessed and we all are extremely thankful for NHF!
We are not alone and we have so much hope for the future.