Raising Awareness About a Rare Childhood Disease

Allow me to introduce you to Jacob Maren, a 13-year-old boy who's working hard to raise awareness about a rare but often catastrophic disease called Infantile Spasms. In Jacob's own words:

When I was six months old, my mom noticed that I was making these small, jerky movements that didn’t look right. She took me to my regular doctor, who didn’t think anything was the matter. But my parents continued to be concerned, and they brought me to a pediatric neurologist. On that day, I was diagnosed with Infantile Spasms (also known as IS, or West’s Syndrome). It was a terrible and very scary day for our family. 

Infantile Spasms is a rare disease that affects only infants, usually striking at about six months. Left untreated, the seizures become steadily worse, causing severe damage. Seven out of a million infants are diagnosed with IS and only 15% of them emerge unscathed. I was very lucky. I responded to the medication and the seizures went away. Most kids aren’t so lucky. Many doctors don’t recognize the symptoms of IS until it’s too late. And even today, because of how rare the disease is, there isn’t a lot of money available for research. 

 For my Bar Mitzvah project, as well as my Hero’s Journey project for 7th grade at The Washington Montessori School, I am trying to raise money through NORD (The National Organization for Rare Disorders) to fund research into Infantile Spasms. NORD has set up a page for The Jacob Maren Fund for Rare Disease Awareness. Today I am a musician. I play the piano, guitar, and ukulele. And I sing. I play basketball and tennis on my school’s teams. I am grateful that I can do all these things. I hope that other kids who will be diagnosed with IS will also be able to say these things some day. 

I met Jacob last March in Italy at the Sirenland Writers Conference, founded by his parents, writer Dani Shapiro and journalist/filmmaker Michael Maren. (In fact, Jacob was so polite to me in the elevator that he gave me hope that my own kids will eventually grow into some manners.) He's put together a music video full of information about IS, plus some gorgeous Italian scenery. I hope you'll take a look, and consider donating to his charitable fund. Jacob hopes to use the proceeds to get more information about this scary but treatable syndrome into the hands of pediatricians.

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