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The incredible story of one 15-year-old's rare diagnosis and how she is helping others

When she was 2 years old, Blosberg’s dad was diagnosed with multiple sclerosis — an autoimmune disease that disrupts the central nervous system. But rather than feeling defeated by the diagnosis, Blosberg says that’s when her dad and mom decided that they weren’t going to let MS stop them from living their lives and experiencing things as a family. “We just learned to do it with MS,” she says.

13 years later, the disease would become even more personal. When Blosberg was in the eight grade, she noticed that her hand felt “a little strange,” she recalls, like it had a glove on top of it. Blosberg says the symptoms she was experiencing felt “familiar” because they “really looked a lot like things that my dad was experiencing,” adding: “We knew what the MS symptoms were.”

She adds that the diagnosis was also frightening. “It was scary — knowing that I had seen my dad giving himself injections for 13 years at that point and the struggles that he faced, knowing that that was in my future.”

She realized she needed to connect with other teenagers who had MS and truly understood what she was going through. So Blosberg reached out to the National Multiple Sclerosis Society — where her father had volunteered for years — but at the time, Blosberg says they didn’t know of any teens with MS.diagnosis.”

It all started with a hobby: Blosberg had always loved knitting, but that became too painful after she developed MS. So after a friend taught her how to make sock monkeys, she decided to make one for herself, using an orange sock — the hue that represents MS — and naming it Oscar. Blosberg eventually started making sock monkeys for other kids and teens with MS so they would feel less alone.

The organization grew from there. The nonprofit has sent nearly 500 care packages to young people around the world, each containing one of Oscar's handmade “buddies” — a smaller version of the original Oscar — along with hosting camps for families and teens with MS pre-COVID. “No one has to fight alone,” she says.

Video Transcript

EMILY BLOSBERG: It was scary. I had seen my dad giving himself injections for 13 years at that point and the struggles that he faced, knowing that that was in my future, it was hard. My name is Emily Blosberg, and I was diagnosed with MS when I was 15-years-old.

My dad was diagnosed with MS when I was two-years-old, and I grew up in the MS community. And my dad taught my sister and I how to give him his injections so that if there was ever a time that he couldn't do it himself, we would be there to help him.

I had just started my 8th grade year and I was experiencing symptoms that really looked a lot like things that my dad was experiencing. My hand felt like I had a glove, just on the front. Eventually, it spread up my whole arm and then covered my entire body. My dad taught me and my sister how to read MRIs when we were very young.

He would point out, this is what the doctors looking at on my scans. So when I brought my own scans home, I was with my parents and I said, there it is. My mom called the doctor and said, you need to get this scan read today, because we're pretty sure this looks like MS.

My dad took the news really hard. We had been volunteering with the MS society, we were speaking with legislators. We were doing everything we could. He said we didn't do enough because we didn't stop the MS before you got it.

MS is a really lonely disease. So I wanted to connect with another teenager that really understood what it was like to experience these MS symptoms. And really started searching the internet, are there other teens out there?

Are there other kids out there? It's not just adults. Kids get MS too. And once I started being able to connect with them, I wanted to help them connect with each other because no one should feel that lonely.

I absolutely love knitting and when my symptoms first started, my skin was so sensitive that the yarn running across my skin was painful. But a friend of mine had taught me how to make sock monkeys. The color of MS is orange.

I found an orange pair of socks and I made this monkey, and he was Oscar. And he then started serving as a way of telling my story. I used to knit. Now I make sock monkeys. And I decided to use that as a platform to teach people about pediatric MS. Oscar's buddies travel around the world and find their new homes with their new humans, connecting people with MS so that no one has to fight alone.

Monkeys live in families and they're all supporting each other. And I think that really relates to the pediatric MS community. Oscar started as a Facebook page, and now we have camps. When COVID started, we've had Zoom calls either weekly, every other week, or for a while, we were doing it daily. And we're expanding our program every year so that we can continue to serve the pediatric MS community in every way we can.

DEAN BLOSBERG: She's been supporting others since she was two-years-old, since I was diagnosed with MS. What she's been able to accomplish since she was diagnosed has been amazing to me, and I'm very proud of what she's done.

EMILY BLOSBERG: My dad, especially, he's my role model. I grew up watching him live with MS and not letting MS get in the way. He showed me how to do that.