Stories about: Our Patients’ Stories

Keeping up with Amanda: Life after brain surgery

Amanda LePage is now a happy 9-year-old.In most ways, Amanda LePage is just like any other rambunctious fourth grader. She loves school, dance class, playing basketball and keeping up with her twin sister Macy and older brother Nathan. Sometimes it just takes her a little longer to do these everyday things. That’s because Amanda has been through a lot in her short nine years.

Amanda was just 5 months old when she was brought by helicopter to Boston Children’s Hospital for a hemorrhage in her brain from an intracranial aneurysm, a type of vascular malformation. Despite long odds, Amanda survived two life-saving brain surgeries and a massive stroke that left her with cognitive delays, no use of her left arm or hand, and weakness in her left leg.

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Chloe’s smile: Moving the needle on Williams syndrome research

Chloe is cared for at the Boston Children's Williams Syndrome Clinic.
“Because of your smile, you make life more beautiful.” ~ Thich Nhat Hanh

Her wide, warm smiles are generous. Even strangers can’t resist smiling back. “Chloe loves people and relationships,” says her mom, Johanna. “She can completely change a person’s demeanor with one of her incredible smiles.”

Now, Chloe’s powerful smile is bringing together supporters and scientists to advance research on Williams syndrome, the rare neurodevelopmental disorder she was born with 11 years ago.

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Experience Journal: From Venezuela for the chance to live

At five months old, Diana was diagnosed with tetralogy of Fallot with pulmonary atresia, a congenital heart defect (CHD) that couldn’t be treated in her home country of Venezuela. “Being told that your child has no chance of surviving is devastating,” says Diana’s mom, Alejandra. “We were given no hope.”

Research into where in the world Diana would receive the best treatment led her parents to the Heart Center at Boston Children’s Hospital.

Throughout Diana’s journey to health, Alejandra relied on support from her husband, her sisters and the community she found in Boston. “From the beginning, we felt that everyone — from social workers to physicians to staff at the Hale Family Center for Families — worked together so that my daughter could have a chance to live.”

With Diana now through surgery and thriving, Alejandra shares her family’s experience to offer hope and guidance to other families coping with pediatric heart disease.

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Spanish Voices Journal made possible by support from Milagros para Niños

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Paying it forward: Care for son’s craniosynostosis spurs mom to run marathon

craniosynostosis

Will Flanigan can’t stop giggling. Whether he’s teasing his older sister, Spencer, or charming his way out of trouble with his parents, this toddler “is always cracking himself — and us — up,” says his mother, Caroline. “We call him Will the Thrill.”

On April 17, 2017, Will brought his good humor from his home in Dallas to the Boston Marathon finish line, where he joined his family in cheering on Caroline as she ran. But this wasn’t just any race. Caroline was running with Boston Children’s Hospital’s Miles for Miracles team for a very special reason: Almost exactly a year earlier, Will was a patient at Boston Children’s.

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