Jake Cheskin

EDITOR'S NOTE: The following is from the March 2006 edition of the Heart to Heart newsletter

From Monica Cheskin

Jake was a very special little boy who touched the lives of everyone who knew him.

Jake was diagnosed with Williams syndrome at seven months.

As an infant he was colicky, had a bad case of reflux, and did not sleep through the night until he was two years old. When the geneticist diagnosed him she told us that Williams syndrome was not an awful diagnosis, that Jake would be a happy boy who would walk, talk, run, play, be loving and sociable. As devastated as we were at the time, we clung to the hope that her predictions would come true.

We were fortunate that Jake did not have cardiac issues. Physi-cally, he looked like a typical WS child with his beautiful curly hair, the stellate pattern in his hazel eyes, his full lips and cheeks.

Yet, in many other ways, things were harder for him than we had expected. My husband doubted that Jake would ever sit up on his own. When he finally did sit by himself at l year, we wondered if he would ever stand by himself.

He finally stood at the age of 18 months.

I had just given birth to my second son when Jake finally started walking at the age of four and a half. At seven, I enrolled him in a physical education class where the instructor told me that she would teach Jake to ride a bicycle with training wheels.

My husband thought I was crazy for making the pedals move for him until he got the hang of doing it himself.

After a month Jake was able to ride around our neighborhood for 20 minute stretches.

Unlike most children with WS, Jake had a severe hearing loss and never learned to speak. He suffered from a mild seizure disorder and at the age of six he received a diagnosis of autism.

The speech pathologist at his school told us Jake did not have the mental ability to use an augmentative communication system. At my insistence, his private speech therapist agreed to teach him to use PECS (picture exchange communication system).and he soon mastered this new "language" and was able to tell us what he wanted to eat or do.

Despite the challenges he faced in his daily life, Jake was a very happy little boy. He had an incredible memory for people and places. His smile could light up a room and his laugh was incredibly contagious. He enjoyed the small things in life: french fries and pizza, taking warm baths, playing on the swings at the playground, having his feet and belly rubbed, and most of all going to Disneyworld with our family. He loved his grandparents, aunts and uncles and had different loving rituals with each. He was capable of great love and taught us so much about living life to the fullest.

It was with incredible shock and sadness that we had to say goodbye to our precious little boy when he passed away unexpectedly in December. More than 240 people came to his wake and countless more attended his funeral services. For a child who was not able to speak, he touched so many people in so many ways. The short time we shared with Jake made us who we are today. Jake will always live in our hearts.

To donate to the WSA in Jake's memory, click here