[Read this story in Spanish/Leer en Espanol]
Jennifer Dipiton Alcantara was only 10 years old when she started feeling strange. Her left side felt vaguely numb, with very little strength and a bit of a “twitchy” feeling. It came on gradually, until...
Leer en Ingles/Read in EnglishJennifer Dipiton Alcántara tenía sólo 10 años cuando empezó a sentirse extraña. Su lado izquierdo se sentía vagamente entumecido, con muy poca fuerza y una sensación de “nerviosismo.” Fue poco a poco, hasta que un día...
Slaton Spinks was small when he was born, but he seemed healthy. As the Texas baby grew, however, his parents, Brandee and Kevin, started to note some peculiarities. “He was delayed, and he just did things differently,” Brandee recalls. “He’d do the...
Three-year-old Olivia Wai, from Fresh Meadows, New York, seemed like a perfectly healthy toddler. She’s an exuberant child — she loves to play music, dance, and play pretend with her little brother, Kingston. Her parents, Joe and Jenny, dote on her...
At age nine months, John “Win” Melvin loved swings, dropping things into buckets, and bathtime! Lovingly referred to as Win (short for his middle name, Winifred, a family name), the little boy kept his parents, Rory and Mimi, hopping – and they...
Cole Sparks was never one to complain. The active 12-year-old Long Island boy lived and breathed lacrosse, and his hard work had earned him a place on the local youth travel team. His proud parents, Chris and Marisa, describe him as “stoic,...
Joe and Christine Pecoraro write about their son Caleb, who underwent surgery with Dr. Greenfield for basilar invagination and Chiari malformation.
When you yourself are a doctor, where do you turn when you’re the patient? Who do you trust to take care of you? That was the question recently faced by Dr. Nicola Nasser, an oncologist who lives and works in the Bronx, New York. For Dr. Nasser the...
Like many happy, healthy little girls her age, 10-year-old Abigail (Abbie) Julian from Croton-on-Hudson, New York, enjoyed hanging out with her friends and playing soccer. That was in 2012. Today she is a happy, healthy young adult — with two brain...
Rebecca Menachem was not making things up. By age 12 she had made so many trips to the school nurse complaining of headaches that, as she recalls now, “everyone thought I was faking sicknesses to go home.” But her migraines were real, and eventually...
Kennedy Lynne McConnell was only a few days old when her mother, Heather, a pharmacist from Long Island, noticed a bony ridge behind the baby’s right ear. She also noticed what appeared to be a flat spot on the right side of Kennedy’s head, and a...
Philip Norton was all too familiar with what it was like to have a child with a serious health issue. For more than a decade, the single father from South Dartmouth, Massachusetts, had devoted himself to keeping his son Braiden healthy and happy,...
With those words, a neurosurgeon assured nervous parents that their little girl was in good hands. With an orbital tumor removed without disfiguring their daughter's face, the parents could not be happier.
To Sara Finne and her husband Ron Cornwall, everything about their newborn son was adorable — even his slightly misshapen head. Little Harry had chubby cheeks and protruding forehead, but was otherwise healthy and normal. Sara planned to ask her...
Leo had always been cutie pie, but once his craniosynostosis had been corrected he had "a perfect round Charlie Brown head." For Pam and Steven Schwadron, the hours following the birth of their son Leo were a blur. After an emergency C-section, the...
Ashleigh and Patrick Kennedy spent four years trying to find out why their little girl was so sick. She was already being treated for a blood disorder, but doctors said her headaches were not related to that. Her eventual diagnosis and treatment for...
Danielle Dietz had a lot of headaches as a high school student, but it wasn't until she learned to trust herself that she found the solution she needed
By Brenda Ries. Shortly after Sean's fifth birthday, we received unthinkable news.
Joshua Fiala was 18 years old and about to graduate from high school when his life suddenly changed. He was on his way to pick up his cap and gown when he lost feeling in his left hand and the side of his face became numb. Thanks to Dr. Souweidane...
Caitlin Downing was not given the gift of many birthdays — she was only five years old when her life was claimed by the deadly brain tumor known as DIPG. In her short life, she played an important role in the quest to vanquish this terrible tumor,...
By Cindy Campbell Ty Louis Campbell was a beautiful baby, then a rambunctious toddler with curly blonde hair and an infectious smile. At two years and ten months old, Ty was the picture of health — no developmental delays, no medical issues — but he...
Sarah and Doug DeMarrais never expected to become champions for Chiari — a condition they'd never even heard of until their daughter was diagnosed. Here is their story.
Kelly, a swimming champ and Olympic hopeful, resisted Chiari surgery until the pain became unbearable. This is her story. I am one of three girls in my family — all competitive swimmers. My parents wanted us to learn to swim after my uncle drowned....
Patti Ventura was shocked by her son's diagnosis, but she transformed her initial shock into determination to secure the best outcome for him. Since that time she's also raised thousands of dollars to help support Chiari research. Here is her story....
In May 2012, gliomatosis cerebri claimed the life of 21-year-old college sophomore Elizabeth Minter. Gliomatosis cerebri is a rare and inoperable brain tumor that strikes children and young adults, and the prognosis is usually very poor. Here are...
Connor was a 15-year-old high school student when he was diagnosed with a severe Chiari Malformation. Here is his story.
