I grew up in LA as a typical Jew-ISH kid. I would like to add that I counted myself lucky for not having any allergies, especially when it came to peanuts or bees at my sleepaway camp, Camp Shalom. When I was in college, I decided to go on “Birthright,” the 10-day free trip to Israel, because I had a camp counselor who was studying there and loved it. I thought, yeah why not- it’s cold in January, but I heard the Middle East is a desert and warm. I didn’t realize I would fall head over heels for the country. First literally head over heels, since I was on a bike and hike trip and managed to fall off my bike on almost every ride. But then, the figurative love kind, where suddenly the world didn’t make sense without me living in this country. So that’s what I did.
I finished up college in Jerusalem, married an archaeologist (mom joke: I really dug myself a hole), and after having a dog for a year, we thought it would be cool to start raising children. When our first son was born with hemophilia, I wondered how it would be to raise him in Israel. Now that he is 8 and a half, and we have a second son also with hemophilia, I can answer for sure: I was a lucky kid with no allergies, and I am a lucky parent to raise my kids with hemophilia in Israel.
When I had my first born, Amichai, I didn’t know what hemophilia was. I was in the hospital and I remember he had a bit of blood from a standard test, on his tiny little foot. That night in his bassinet I saw there was more blood. I thought that babies just bleed a lot. But as a mother, my instincts kicked in. I asked a nurse to come and she informed me that babies don’t bleed like that. Before I knew it, the doctors were running tests and assuring me they were checking for everything. I was in a fog of exhaustion and confusion. The next morning I was told that my first born little boy, had a condition called hemophilia. The doctor explained that it was no longer considered a life threatening disease. He was going to be OK and so was I.
It was this early in Amichai’s life that I saw the true blessings of raising hemophiliacs in Israel. There is universal health coverage and we were immediately sent to a top hematologist who explained and answered all my ridiculous questions (why oh why did I google). We have always gotten factor for free and now that we are part of a clinical trial, we get it delivered to our door.
At our local hemophilia Center, we have access to the top doctors and professors for checkups - and on speed dial! I can’t tell you how many times I have sent a picture or question to a top hemophilia expert, and even if she is somewhere in the world at a hemophilia conference, she still responds to me. We also have a hemophilia nonprofit called “Aleh” that gives us access to a social worker, parent support groups, and special events for kids and families. Just recently we went to the only mountain with snow on it and had a special day with Israeli soldiers: riding dog sleds, snow machines and sledding down the hill. We have a great video of Amichai rolling off the sled, it’s hilarious!
As parents, my husband and I get a lot of support as well. We receive a monthly stipend from the healthcare system to help us with work we may miss. We get compensated for additional days off as well as the usual sick days. It is for all these reasons that I believe we are beyond fortunate to be raising children with hemophilia in Israel. And while it is not all rainbows, I do believe I have found my pot of gold, and that is because I can see the clouds, the rain and the sun. I am lucky to know what it is to be healthy, what it is to have an incredible healthcare system, and how to raise a child to be their best self, despite a condition that may label them otherwise.