Life of an Angel

A hug, a smile, a deep look into your soul. This is how our Angelman Syndrome children communicate with us.  Their unspoken words touch us to the core. Most Angelman Syndrome (AS) individuals cannot speak.  They communicate through gestures and body language.  Angelman Syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of the disorder include: developmental delay; lack or absence of speech; seizures; and walking and balance disorders.  

Eighteen years ago, I moved my family from New York to Westford in search of answers for my daughter, Isabella, who was the youngest child ever diagnosed at Boston's Children's Hospital. She was only 11 months old at the time. It changed my world to hear that my little baby girl would "never talk, never walk, suffer seizures, be mentally disabled, and require 24/7 care her whole life". 

Today, Isabella attends Westford Academy.  She is integrated into some classes.  Among her favorites are Ceramics and Intro to Acting.  She is often seen and recognized in town running errands with my family, eating out, and attending Church.  She has always been a fixture at all her older brother Alex's soccer games and is now attending her younger brother Domenic’s games.  Isabella has participated in the Nashoba Valley Special Olympics Swimming and Soccer Program, and is currently trying her hand at Track and Field, though swimming remains her absolute favorite sport. Isabella's greatest strength is her social skills and her love of people.  She truly enjoys seeing people having fun.  She loves attending events, plays, concerts and has been known to dance up a storm at parties and fund raisers. She has a fantastic sense of humor and a contagious laugh that can make anyone around her crack up.

And while her spirit and love of life is limitless, her care is a lifelong daunting task.  Being trapped in a body that allows her extremely limited communication and physical ability is frustrating to her and all of us caring for her every moment of the day.  Her choices are limited and dictated by others. Her life rests in the hands of those around her. 

Thank goodness for the Angelman Syndrome Foundation (ASF).The Angelman Syndrome Foundation Walk has been an essential source of funding for the ASF organization since its start in 1999. What began as a single volunteer walk site now includes 28 walks across the country and is recognized as the top fundraising event for the organization. Through education, information, research, advocacy and support, your participation in the National Walk helps all of us at ASF take strides toward improving the lives of those impacted by AS. With your help, we are moving closer to powerful treatments and an eventual cure for Angelman Syndrome. We are continually grateful for the support we receive year after year. This Saturday, May 18th, from 10 am to 1 pm, Boston will host its 4^thAnnual ASF Walk at the Chelmsford High School.  Registration begins at 8:30 a.m.  There will be refreshments, food, mascots, live entertainment by the band “The Heritage” and so much more.  There will be smiles and hugs galore from our Angels.  Please join us.  The event is sure to lift your spirit, too. 

If you are unable to attend but would like to donate, it would be greatly appreciated.  Donations can be made at:http://secure.angelman.org/participant/isabella.

Thank you again from the bottom of my heart,

Peter SanGiovanni  (Dad to Isabella)

President 

Upper Northeast Region
Angelman Syndrome Foundation
"Give them a reason to smile"

http://www.upneangels.org/
http://www.angelman.org