Stories about: Department of Neurology

Samantha’s story: Partnering with BACPAC program to end bullying

During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words:

“Why are you on this earth? You don’t deserve to be alive.”

The bullying followed her every day.

“I didn’t want to go to school because I knew he would be there. I was afraid,” says Samantha, now 12.

Weeks into the school year, the harassment and intimidation escalated and turned physical.

“It was usually mental [abuse], but at one point in fifth grade the bully came up to me, and he punched me on the back,” says Samantha quietly. This was the breaking point.

“I had enough,” says Samantha’s mother Karen. “The verbal and physical abuse needed to stop.”

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Noah’s story: Enterovirus and a race against the clock

enterovirus“I’m so excited to babyproof my house,” says Elisa Holt. “I haven’t had to. Now, Noah wants to climb and do all of these normal baby things.”

The toddler, born in March 2014, sailed through his first six months of life.

As summer turned to fall, enterovirus D68 (EV-D68), a mysterious virus linked with paralysis, started to dominate headlines.

On Oct. 3, 2014, Elisa was nursing Noah when she realized something was wrong with her son. “I went to sit him up and he just fell over. I did it again and the same thing happened.” When she realized he wasn’t moving his feet, legs or toes, she called her son’s pediatrician, who directed her to Beverly Hospital.

“We are so so thankful for the emergency room doctor [Dr. Munirah Qualls] who told us, ‘I don’t know. I’m going to send you to Boston Children’s Hospital.’ I know Noah would not be where he is today if the Beverly Hospital doctor did not move us as fast as she did.”

Within 15 minutes, an ambulance arrived to rush Noah to Boston Children’s. The emergency department was on high alert for EV D-68 — a tricky virus that can mask itself as many other illnesses.

“Noah’s doctors were racing against the clock to make a diagnosis,” Elisa says.

She and her husband Mitch cuddled their baby boy.

“We were waiting to see what Noah’s future held. How did we end up here? Would his paralysis be reversible?”

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Forty years waiting for a cure: ALD gene therapy trial shows early promise

adrenoleukodystrophy-Ethan-Emily
A small piece of notepaper, folded twice, sits tucked in a slot of the secretary desk in the living room. Every so often, I pull it out, read it, then reread.

Addressed to my mom, the paper has a question and two boxes, one “yes” and one “no,” written with the careful precision of a 7-year-old.

I am sad of Ethan. You too?

A check marks the box.

— Yes. Yes, I am sad too.

Read Ethan’s story on our Vector blog and learn more about the ALD gene therapy trial.

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Madison’s story: Speaking up for autism

Madison1Madison Marilla had reached her breaking point.

Starting at a new school after a cross-country move from California to Massachusetts isn’t easy for any eighth grader, but Madison wasn’t just any middle school student. She was diagnosed with autism at age 2.

“No one understood my autism, obsessive-compulsive disorder (OCD) or attention-deficit hyperactivity disorder (ADHD).” Madison says. “Kids would push me, steal my things, trip me in the hall, memorize my locker combination.”

Madison started feeling very negative.

After speaking with her mentor, she decided the kids in her class might be able to understand her better if they were more aware of her autism.

Jess, Madison’s mentor, gave her courage and a voice. “She changed me forever. She was always there for me and she always supported me.”

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