Author: Jenny Fernandez

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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A dream deferred but not denied by ACL tear

Emily plays soccer before her ACL tear.

The dream of playing college soccer was within reach. Emily had been working on her game since she was four years old, and at 16 was now co-captain of both her high school and club teams. Colleges were taking note.

Just three games into club season, Emily was on the field in North Carolina, running back to her net when she tore her left anterior cruciate ligament (ACL). She heard her knee pop, and knew immediately what had happened. “I’ve always had a high tolerance for pain, but that definitely raised the bar,” she says. Her mother Lauri can still hear her daughter’s screams from that day as she watched the event unfold from the sidelines.

Six months later, Emily is tackling recovery the same way she tackles life. “Emily is a go-getter,” says Lauri. “In school and in soccer, she works and works and works — she just never stops.”

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When nursing runs in the family

For some, being a nurse at Boston Children’s Hospital is a family affair. In this video, meet a few of the men and women who care for patients and families alongside their own siblings, parents, children and spouses:

  • Sisters-in-law Shanna Barker (MICU) and Kelly Wietecha (MICU)
  • Caitlin Dolan (Center for Inflammatory Bowel Disease) and her mother Kathy Waddicor (Adolescent Medicine)
  • Sisters Michelle Audain (MSICU) and Pascale Audain (MICU)
  • Pat Pratt (Nursing Director of Patient Services — Procedure Units) and her daughter Amy Sparrow (Center for Motility and Functional Disorders)
  • Paula Conrad (MICU) and her niece Emily O’Brien (Intermediate Care Program)
  • Jean Gouthro (General Medicine) and her niece Karin Gavin (General Medicine)
  • Twin sisters Julia Perkins (Enteral Tube Program) and Rosella Micalizzi (Colorectal and Pelvic Malformation Center)
  • Liz Sacco (CICU) and her mother Patricia Burke-Sacco (Day Surgery)
  • Sisters Megan Dube (Inpatient Gastroenterology) and Denise Currier (Intermediate Care Program)
  • Michael Greenlee (Cardiac ICU) and his wife Lisa Greenlee (Cardiac ICU)

Learn more about Nursing at Boston Children’s Hospital.

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