Department of Neurology | Patient Stories

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact the Department of Neurology

  • 617-355-6388
  • Fax: 617-730-0284
  • International: +1-617-355-5209
  • Schedule An Appointment:
    Monday-Friday 7:00am-8:00pm
    Saturday 9:30am-6:00pm

From autism to spinal muscular atrophy to simple sleep problems, every child and family we see in Neurology has a story to tell. We hope you draw as much inspiration and hope from their stories as we do.

Madison-speaking-about-autism

AUTISM SPECTRUM CENTER
Speaking up for autism: Madison's story
Starting a new middle school, Madison decided the kids in her class might be able to understand her better if they were more aware of her autism.

Noah

NEUROMUSCULAR CENTER
Noah's story: Enterovirus and a race against the clock
After sailing through his first six months of life, Noah stopped moving his legs, feet and toes. The cause turned out to be enterovirus D68, a virus linked with paralysis. He’s now recovering with the help of immunoglobulin therapy, steroids and physical therapy.

Alainah-microcepahly

BRAIN DEVELOPMENT AND GENETICS CLINIC
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.

end bullying

BACPAC ANTI-BULLYING PROGRAM
Parterning 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.

vivienne-spinal-muscular-atrophy

NEUROMUSCULAR CENTER
Life with Vivienne: Clinical trial brings new hope in spinal muscular atrophy
TAs 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 improved and become stable with an experimental drug called SMNRx.

ketogenic diet severe epilepsy

EPILEPSY CENTER
Ketogenic diet turns around Sammy'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. 

sleep-program

SLEEP CENTER
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.

cdkl5-gene-rare-epilepsy

CDKL5 CLINIC
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. 

rare-disease-genetic-testing

ALL PROGRAMS
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. Her second post addresses her role as a "citizen scientist," forming communities with other families and supporting research.

clinical-trial-tuberous-sclerosis-complex-tsc

TUBEROUS SCLEROSIS PROGRAM
Clinical trial may be what halted Charlotte's seizures
In April of 2014, with his lungs not expected to last the year, Bobby Donovan—who was diagnosed with Cystic Fibrosis when he was 4 months old—received the double lung transplant, which not only saved, but transformed his life.


Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

Close