Local grandmother pens book about Noonan Syndrome

February 5, 2019 9:22 am

EAST GREENWICH, R.I. (WLNE-TV)— Not every four year old can say they have a book based on their life, but Lila Santilli does. She’s the main character in a story about a little girl with a feisty spirit who won’t let a rare genetic disorder define her.

Lila’s journey with Noon Syndrome began shortly after she was born. The rare genetic disorder prevents normal development in various parts of the body. For Lila, that has meant she requires some speech and other services.

“We said from the beginning that Lila has Noonan Syndrome, but Noonan Syndrome doesn’t have Lila,” said Laura Santilli, Lila’s mother.

Lila’s grandmother authored the book, ‘Lila Lu and the things I love to do’, to bring awareness to the syndrome. The message of the book is about how the East Greenwich girl and others like her cannot be stopped by a diagnosis.

The book was given to Lila as a surprise this past Christmas. It quickly became her personal favorite.

“She couldn’t believe that this book was about her,” said Millie Santilli, Lila’s Mimi.

A portion of sales from the book will be donated to help with support and treatment of health issues that occur as a result of Noonan’s and other genetic disorders.