If You Could Cure Your Special Needs Child, Would You?
Author: Joseph and Jill Tantillo
Published: 2017/05/03 - Updated: 2020/02/22
Category Topic: Disability Publications - Academic Publications
Page Content: Synopsis - Introduction - Main
Synopsis: New Book about a teen with Williams Syndrome explores the conflicts, challenges, and triumphs of raising a special needs child. Williams Syndrome is a rare genetic disorder caused by a spontaneous deletion of genes on chromosome #7.
Introduction
Joey Tantillo was diagnosed with Williams Syndrome when he was just nine months old.
During the very first year of Joey's life, he had to endure a life-threatening heart procedure. His father slept under his crib the night before the surgery and made a deal with God:
Save his baby son's life and he would be fine with whatever was to come.
Main Content
God answered his prayer.
Today, Joey is an active 13-year-old living with Williams Syndrome, and his parents are the authors of a new book, loosely based on their lives, called The Stars in His Eyes.
Williams Syndrome is a rare genetic disorder caused by a spontaneous deletion of genes on chromosome #7.
Symptoms of Williams Syndrome include cardiovascular issues, developmental delays, learning challenges, and a distinctive facial appearance (including a "starburst" eye pattern).
"My wife Jill and I decided to publish this book in honor of our son, Joey, our family, and the many other families of children with Williams Syndrome around the world who are striving to live a normal life despite this diagnosis," says Joseph Tantillo, Sr.
In the fictional story, Joseph and his wife are faced with a choice to sign up for a questionable trial treatment program that promises to cure the symptoms of Williams Syndrome and turn their son into a "normal" teenager.
News of the experimental treatment stirs a storm of drama for all of the families who are asked to participate.
They are forced to ask themselves: Is it OK to "play God?"
The Tantillos' new novel is helping to bring new attention to Williams Syndrome, which affects 1 in 10,000 American children and adults.
Children who have WS are often very social, happy, and talented. At the same time, they have health and developmental challenges that are likely to follow them throughout life.
The Tantillo family is looking forward to participating in the annual Williams Syndrome Walk. Joey and his parents will be signing copies of their new book, The Stars in His Eyes, at the event, which will benefit the Williams Syndrome Association.
Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by Joseph and Jill Tantillo and published on 2017/05/03, this content may have been edited for style, clarity, or brevity.