Department of Neurology | Patient Stories

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Contact the Department of Neurology

  • 617-355-6388
  • International: +1-617-355-5209
  • Schedule An Appointment:
    Monday-Friday 7:00am-8:00pm
    Saturday 9:30am-6:00pm

Microcephaly: Alainah’s story

Alainah was born with microcephaly, or a smaller-than-average head. She’s receiving early interventions for developmental delay while Boston Children's neurologist Ganeshwaran Mochida, MD, seeks the genetic cause of her condition.

Partnering to end bullying: Samantha's story

When Samantha was 10 years old, she was bullied by a male classmate, hearing: “Why are you on this earth? You don’t deserve to be alive.” Boston Children’s BACPAC Program provided a safe haven.

Life with Vivienne: Clinical trial brings new hope in spinal muscular atrophy

As Vivienne grew from infant to toddler, she was slow to reach motor milestones and was clearly losing strength. She was diagnosed with spinal muscular atrophy, but has shown some improvement with an experimental drug called SMNRx.

Parents, don’t suffer … or how Oliver finally got to sleep

At 14 months of age, Oliver ruled the night, waking his parents repeatedly and refusing to nap. His exhausted parents came to Boston Children’s Sleep Program, where they received a four-part customized plan that quickly had Oliver sleeping through the night.

Ketogenic diet turns around a boy’s severe epilepsy

Sammy was having hundreds of seizures a day and was diagnosed with Doose syndrome, a severe form of epilepsy that isn’t helped by medications. A rigorous high-fat, low-carbohydrate diet has brought his seizures to a halt.

CDKL5: Understanding rare epilepsies, patient by patient, neuron by neuron

Haley’s severe epilepsy, linked to the CDKL5 gene, keeps her from speaking, but she communicates volumes with her eyes and with the tablet she controls with her gaze. She’s also helping to advance the science around her rare disorder.

On being a “rare disease mom”

Hillary Savoie blogs about her search for a diagnosis for her daughter’s neurologic problems. In her first post, she describes Esmé’s genetic testing process. Her second post addresses her role as a “citizen scientist,” forming communities with other families and supporting research studies.

Tuberous sclerosis: Clinical trial may be what halted Charlotte’s seizures

Charlotte has tuberous sclerosis complex (TSC), a rare genetic condition in which benign tumors grow in the brain and other organs. Since enrolling in an international study everolimus (Afinitor®), a drug that attacks TSC’s root cause, Charlotte’s seizures have stopped and her speech and alertness have improved.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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For Patients: 617-355-6000
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