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Full Circle: My Brother’s Keeper
Grandkids Zoe and Max have something special

Iron Max looks like any other 5-year-old. But he’s not. Iron Max has hemophilia, a severe bleeding disorder. His blood doesn’t clot like the other kids. Bumps and bruises mean nothing to most kids. For Max, they could mean a hospital stay.

 A lot of stuff that other kids take for granted, Max can’t do. No contact sports. No soccer. And he’s from a big soccer family. No football, no basketball. Not even baseball. The body torque from swinging a bat could cause a bleed.

One of the problems with hemophilia is that no two victims are alike. When a bleed starts, you can’t take Max to any hospital to get a shot. The doctors at Children’s Hospital in Philly have developed a unique clotting factor for Max. No other person in the United States uses the same factor formula. So, Max’s parents have to carry his factor with them and keep it refrigerated wherever Max goes.

 But the main problem with Max’s strain of hemophilia is that there is no cure. And there’s not enough research to find one. Research means money. And money means media exposure. Face it, hemophilia isn’t as “hot” as other diseases. Hemophilia doesn’t have a pink ribbon or a red heart. Bruce Springsteen and Sting won’t be holding a telethon for it this year.

 So, where will the money come from? Zoe is Max’s sister. Zoe is 8. But Zoe has always been old for her age. Zoe has always thought big. When she was 6, she and Max appeared on a segment of “Good Morning America.” They picked their Final Four brackets and asked people around the country to back them with donations to CHOP.

The GMA segment was hosted by Josh Elliott. A few days later, Josh Elliott announced he was leaving GMA for NBC. When Zoe heard the news, she quickly ran into the other room with an important question for her dad.

“Dad,” she said, “does this mean we’re not going to be on ‘Good Morning America’ anymore?”

That’s just how Zoe thinks. So, a few months ago, when she was reading Scholastic Magazine, well, here, I’ll let her tell you the story…

“I started reading about a girl who raised thousands of dollars for cancer research, and since my brother Max has hemophilia, I wanted to do something to raise money for hemophilia research.

 “Max has had hemophilia his whole life. We found out about it when he was 9 months old, and he had to wear a helmet every day for three years. Just last year he got a port – a metal disk in his chest like Iron Man. Now we call him Iron Max.

“I was thinking what to do to raise money, and I wanted to include my friends. Finally, I thought to make a calendar, so I asked my friends to take photos for the calendar. I can’t believe how many said yes!

“All of the pictures in our calendar were taken by kids in grade school. All of my friends, and some of my family too, wanted to help raise awareness for hemophilia.”

Zoe is being a little too modest here. She gave the cause its name: Hearts 4 Hemophilia. She created the logo. And she gave the calendar a theme: Things We Love. She had each of her friends take photos of things they loved. Anything from flowers to sports equipment to pets. Zoe made all the calls. She gave her junior photo staff directions and deadlines. And, to no one’s surprise, she brought the project in on time.

The result is one of the most beautiful calendars you’ve ever seen. But the real result will be all the money this brings in for hemophilia research. Zoe, who’s also very good at math, is projecting thousands of dollars. The money will go directly to CHOP. And Zoe’s website, Hearts4Hemophilia.org, is now linked directly to the CHOP website.

Lately, everyone has been congratulating Zoe on her work. She just smiles. And gives Max a hug.

September 2015
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