Today I feel lucky. No, I didn’t win the lottery and I didn’t find out a long-lost relative left me a pile of money. Today, the family, including Sarah, the most awesome babysitter on the planet, participated in the New York Chapter of the Hemophilia Foundation’s annual walk. So why would this make me feel lucky? Because although my son, Jack, is a hemophiliac, his condition is very mild in comparison to so many of the other children we saw at today’s walk. Yes, he still has to be careful (as careful as an active, rambunctious 6-year old can be), but if he had to be born with this condition, he (and we) definitely won the lottery.
According to the CDC, it’s estimated that about 20,000 individuals in the U.S. have hemophilia. Could that number be any smaller? And how in the world did Jack get this? For a little history: because my father was a hemophiliac, as a female, I automatically carried the gene, but that didn’t mean if I had a boy I would pass it on to him. Guess what? He got it. But like my father, his case is very mild. Now if he could only get his 6’4 height.
So what does this even mean, and what is hemophilia? It’s a bleeding disorder typically seen in males, whereby if there is an incident as minor as a dental procedure or nosebleed to a more major trauma like a bone break, head bonk or fingers caught in the door, for a hemophiliac it will take longer for their blood to clot. If not treated with special medication called Factor, there could be long-lasting, severe complications. And even though Jack is what is considered a mild case, there is still concern for him, especially in cases where you can’t see his injury. It’s not lost on me that I will be able to use this condition when explaining why he will never play football or any other major contact sport – again, I feel lucky!
Once considered a “royal” disease, hemophilia can be traced as far back as Queen Victoria. She apparently passed it on to several of her daughters and by way of one of her granddaughters, Alexandra, who married Nicholas, the Tsar of Russia; their son Alexi had a very severe case. It is thought that they were paying so much attention to his condition that they weren’t paying enough attention to what was happening in Russia at the time and this (among other reasons) is what led to the Russian Revolution in 1917. Talk about passing the blame!
As we were walking around the grounds this morning talking to the different pharmaceutical reps and nurses who were there peddling their meds and treatment options, a total calm came over me. While I’m not happy and feel enormous guilt that Jack was born with this condition I essentially passed on to him, and I hate seeing him in pain each year as they test his blood, and during the times he has to have injections because of an accident (only 2 times so far; I’m sure there is more to come since he’s all boy!), it’s all okay. I’ve fast come to learn that in life, if it’s not one thing – it’s another, so be grateful for the little things (like mild conditions of a disease) and always count your blessings, especially if one of your biggest blessings is a little boy named Jack.
P.S. – Next year we’ll be forming Team Jack for the walk so if you want to learn how you can help please let me know or visit the National Hemophilia Foundation’s website for more information.