Joey’s Light

Life with Williams Syndrome

By Natalie Shammami

If you meet my brother Joey, you won’t forget him. He’ll introduce himself, ask your name, and from that moment on, he’ll remember you. He’s not just friendly—he’s genuinely interested in people. He wants to know who you are, what you like, and how your day is going. And he wants to be your friend.

Joey isn’t just my brother—he’s my best friend, and I couldn’t imagine life without him.

Joey has Williams Syndrome (WS), a rare genetic condition caused by the deletion of 26-28 genes on chromosome 7. This missing genetic material affects many aspects of development, including cognitive abilities, heart health, and social behavior. One of the most recognizable traits of WS is an intense, almost magnetic, desire to connect with others. Joey embodies this in every way.

But Williams Syndrome is more than just a label—it’s a complex condition that shapes the lives of those who have it and the families who love them. Joey’s personality is one of the brightest parts of my life, and his journey has also been filled with challenges, growth, and the unwavering support of our family.

Understanding the Spectrum of Williams Syndrome

Williams Syndrome varies in severity. Some individuals, like Joey, are on the milder end of the spectrum meaning, they have strong verbal skills but struggle with things like math or spatial reasoning. More extreme cases can involve significant intellectual disabilities, serious cardiovascular issues, and difficulties with daily living skills. No two people with WS are exactly alike, but all share an unmistakable warmth and desire for connection.

Joey’s Awareness and Aspirations

Joey is very aware that he has Williams Syndrome. Since he’s on the milder end of the spectrum, he understands what that means in a way that not everyone with WS does. Sometimes, he wonders why him? He knows that some people with WS struggle more than he does, and he’s asked before, “Why did I get this? Why do I have Williams Syndrome when not everyone else does?” Those are tough questions to answer, especially when, as a family, we wouldn’t change a thing about him.

Like anyone else, Joey wants independence. He wants to do all the things that people his age do—drive, live on his own, have a job he loves. But some of those things aren’t possible for him.

Driving, for example, just isn’t safe. People with WS often struggle with spatial awareness, depth perception, and reaction time. They can have trouble judging distances and processing information quickly, which makes an activity like driving a vehicle dangerous. Joey has difficulty understanding this, and wants to drive like everyone else.

More than anything, he wants to feel normal. He doesn’t want to be treated differently or left out. He wants the same experiences and freedoms as his peers, even when they’re not always possible.

Growing Up with Williams Syndrome: The Fight for Joey’s Future

From the beginning, my parents made sure Joey had everything he needed to succeed. If he needed extra help, my mom fought for it. If a teacher underestimated him, she set them straight. If a doctor doubted his progress, she proved them wrong.

My family has always looked out for Joey. He’s special in ways that go far beyond his diagnosis. He’s kind, funny and full of life, and we all do whatever we can to make sure he’s happy, safe, and given every opportunity to thrive.

The Special Gifts of Williams Syndrome

People with Williams Syndrome often have incredible strengths in music, language, and memory. Many have a deep emotional connection to music, and some even have perfect pitch. Joey is no exception. He loves listening to music and can remember songs after hearing them just once. Music has always been a huge part of his life.

His memory is another one of his strengths. Many people with WS have an impressive ability to recall names, details, and conversations, and Joey is no different. If you’ve met him once, he remembers you.

Joey has hobbies and passions that go beyond his diagnosis. He’s a huge WWE wrestling fan and could talk about it for hours. He loves basketball, watching sports on TV, and is into art. He finds so much joy in these things, just like anyone else.

But There Are Challenges, Too

For all of Joey’s strengths, there are also areas where he struggles—especially with math. Numbers and spatial awareness can be really tough for people with WS. Basic math and even judging distances can be challenging.

Socially, his friendliness can also be a double-edged sword. Joey doesn’t always recognize when someone is taking advantage of his kindness. He assumes everyone is good-hearted because he is. We’ve had to teach him about personal space, setting boundaries, and being careful with new people. This is something that many people with WS face—their trusting nature makes them vulnerable, which is why awareness and support are so important.

Science, Support, and Community

There’s still a lot we don’t know about Williams Syndrome, but researchers are working hard to understand it. Some studies suggest that people with WS don’t process fear the same way others do, which is why they’re so naturally social. That’s part of what makes them special, but it’s also why they need guidance and support.

Thankfully, there are amazing organizations, like the Williams Syndrome Association, that provide resources, research and a community for families like ours. Having that support system makes a huge difference.

And Joey isn’t alone in this. I’ve met so many incredible people with Williams Syndrome, each with their own unique personality, strengths, and challenges. No two people with WS are exactly alike, but they all share that same warmth—that same ability to make the world a brighter place just by being in it.

Many Chaldean families have been blessed with special needs family members, and my family is no exception. Having Joey in our lives is not only a blessing, but a reminder of what truly matters. He has humbled us, taught us patience, and brought more joy than words can describe. Williams Syndrome may be rare, but the love and light Joey brings into our lives is something that everyone should be lucky enough to experience.

Caption:

Joey at 2023 WWE SummerSlam at Ford Field.