At age 4, Ilana Adler was diagnosed with neurofibromatosis, a genetic disorder that causes tumors to grow throughout the body. The 30-year-old has already had three surgeries to remove tumors. In high school, she underwent a procedure to remove a cancerous tumor from her leg. At the moment, she has one on her hippocampus in her brain, though it’s not cancerous.
This ordeal that has made the Northern Virginia native want to help others in similar situations. Adler, a former preschool teacher is devoting herself full-time to helping children with health issues.
For the past year, Adler has helped develop and implement the Horizon Day Camp at the Pozez Jewish Community Center of Northern Virginia. The free summer camp gives kids with cancer and their siblings a place to let loose and play without worry or fear.
How did this opportunity come about for you?
The executive director here, Jeff Dannick, approached me two years ago. He said, “I’m bringing a camp here for kids with cancer. I want you on my team.” I said, “Can I start tomorrow?”
Not that I didn’t love teaching preschool. But my passion has always been working with kids with medical conditions. And I couldn’t be a doctor. I can handle blood but not too much. So when Jeff said, “I’m bringing this camp here,” I was beyond excited.
How did the camp do in its first summer last year?
It was amazing. I don’t think it could’ve gone any better. We had from March to June to plan camp, find campers and get staff. The fact that we had 35 campers on our roster is truly amazing. Little sleep, lots of stress and working really well with the director of our camp, Joellen Broubalow. She and I were able to create an amazing camp.
It will be back this summer. We’re projecting about 75 campers. Word is spreading fast. A lot of the children, they meet in treatment.
How does the camp work?
There are children in treatment and children out of treatment. You have to have been diagnosed within the past five years to come. This past summer we were fortunate to have relatively healthy children.
There’s also no attendance policy. Kids can come one day or every day. Whatever is most comfortable for them and their families. Some campers came half days. Some came five days. Some came every day.
We will work with the families. To make sure that you’re comfortable and that your child is comfortable.
What was it like for you to grow up in a similar situation with neurofibromatosis?
I was diagnosed when I was 4. So to be perfectly honest I don’t remember too much about it. It was kind of hidden. We didn’t really talk about it. It wasn’t super severe. I’d go for MRIs every couple months and move on with life.
At age 13 or 14 I found a camp for kids with neurofibromatosis. I thought I was the only kid who had this condition. That created this family aspect. We’re all in this together. I started using my voice to share with the world this condition. I was more comfortable with myself.
What was it like to need that surgery to remove the cancerous tumor?
In my head I had been like, “I don’t have it as severe as others. I’m OK. It’s not that big of a deal.”
A majority of my life we didn’t talk about it. It’s something I have and we’re moving forward. This was the first time we started talking about it. It did push me again to be that voice for other children. It’s scary. You can be scared. That’s an okay feeling but we need to think positively and move forward.
I wrote an article for my high school paper after I had surgery. I think the last line was, “I have NF but NF doesn’t have me.” ■