2011 Families

In 2011, multiple families will travel to D.C. to participate in Family Advocacy Day and advocate on behalf of Children’s Hospital Boston. Here, we share their stories.

Read the blog archive from our 2011 families.


Lily is a unique 1-year-old from Maine who loves playing with her 5-year-old brother, coloring, eating and being outdoors. Born with a severe skull deformity called craniosynostosis and a rare genetic condition called Saethre-Chotzen syndrome, doctors referred the family to Children’s Hospital Boston within minutes of her birth. She had her first skull surgery at just 2 months old and was helmeted for the next six months. Regular medical appointments and helmet adjustments kept her busy until Lily had skull reconstruction performed at 15 months. The outcome was a great success and allowed the family to reduce the regular trips to the hospital to once a month. It is probable that Lily will have another skull surgery and a few minor procedures, but today she’s a proud graduate from physical and occupational therapy. She is growing into a beautiful little redhead with a loving personality.


Kylie is a lively and lovable 16-month-old girl from New Hampshire who loves to spin, swim, jump, and do pretty much anything else that involves action. She was born with numerous medical complications that left her local doctors puzzled, and was referred to Children’s Hospital Boston, where doctors diagnosed her with CHARGE Syndrome and Sleep Apnea. CHARGE Syndrome is an incredibly complex genetic condition, which has caused Kylie difficulties with feeding, walking, and communication. She is also deaf and legally blind. Kylie has undergone procedures and is followed by multiple specialists at Children’s where her care makes it possible for her to overcome obstacles and progress in ways that her family, friends, and doctors never imagined.

One Response

  1. Good luck in Washington to Heather, Jon & Kylie. Our prayers and thoughts are with you. She is one beautiful little girl.

    Love, Leon & Brenda Vezina

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