Local mom educates public, parents about Williams syndrome

The Grapevine Source was fortunate enough to speak with Amanda McNew, who was the Co-Coordinator for the local Walk for Williams fundraiser at Parr Park in Grapevine on May 6, 2018. McNew has a young son that was born with Williams syndrome and is passionate about helping with education and fundraising. She is also the Media Manager for the Grapevine Police Department.

The Walk benefitted the Williams Syndrome Association (WSA), a national organization whose mission is to, “Enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education,” according to their website.

What is Williams Syndrome?

According to WSA, Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music. It is caused by the spontaneous deletion of 26-28 genes on chromosome #7.

How Effective Was the Walk?

McNew reported that the Grapevine Walk alone raised over $7,800 for the WSA. The event was enhanced by offering Kona Ice sno-cones from Brain Freeze Events in Euless, which donated a portion if its sales to the WSA, and featured Star Wars characters provided by the Star Garrison 501 Legion, which,”Is a worldwide Star Wars fan club celebrating the Star Wars universe using costumes and props, in particular those of the Stormtrooper characters, Imperial forces, and other various ‘bad guy’ characters.” A donation was also made to the WSA on behalf of the 501st Star Garrison.

The event also featured a Grapevine Fire Department truck and Grapevine Police Department vehicles.

Their participation was important because, “Williams kids have an extreme sensitivity to sound,” said McNew. “Having the fire truck and police vehicles there, parents and first responders are able to teach kids that, despite the sudden and loud noises of the sirens, the people driving them are there to help. Police and Firefighters are our friends.”

The event was such a success that many North Texas families want Grapevine to be home to next year’s walk as well, citing the welcoming feel of Parr Park, and the central location of Grapevine. “Everyone just really loved it here,” said McNew. “I’m proud of our city.”

More About Williams Syndrome:

People with Williams syndrome tend to have no sense of “stranger danger,” and often the use of cues, like name tags or lanyards used at conferences, help them discriminate between strangers and people who are in their groups.

“A lot of times, they just want to give people a hug. There’s a lack of boundaries, which could be potentially dangerous, to say the least,” McNew said. “At the bi-annual conferences, some of our Williams syndrome young adults watch for people wearing a WSA lanyard because they know it’s OK to hug that person. It’s all about safety.”

For McNew, having a child with WS has lit as fire in her to help educate people and provide them with resources. “This is a rare thing and most people, including lots of doctors, don’t know what it is or what it means medically. Early interventions are critical, and we want families impacted by WS to know what kind of help and resources are out there,” she said.

A Personal Touch

“When you have a child with Williams, everything is magical again,” said McNew. “The magic of life, the beauty and the miracles never go away when you see the world through this child’s eyes.”

Of course, having a child with WS has not been easy. “It’s a roller coaster. There are medical, personal and societal challenges that you’d never thought you’d face. Life is not quite how you imagined it would be,” she added.

“It is harder to make and maintain meaningful friendships with other adults. You lose some friendships because they can’t understand what we are up against, and that’s okay.  The hard times are at social events with the parents who are welcoming. While other mothers and fathers can socialize and enjoy the party, I spend much of my time chasing around my child, worried about what he’s getting into and losing out on those adult social connections. This is another reason why it is so important to meet other Williams syndrome families. WS parents know what you’re going through,” said McNew. “They know what you’re up against, and the fears, but they also understand the importance of celebrating the good, recognizing small victories and ensuring our children have the tools they need to reach their full potential.”

What’s the Prognosis?

Children born with Williams syndrome will face its effects for a lifetime, and research is key to unlocking the best therapies and solutions for a meaningful life. Efforts to fund research include Walks like the one described above, and there are also conventions – the next one is scheduled for July 11-14 2018 in Baltimore, MD. The goal of these events is not only to fund research and therapies, but also to gather parents and caregivers of WS people for support and fellowship and to educate/provide resources for those that need it.

For More Information:

 

Slideshow from the Walk at Parr Park (photos courtesy of Amanda McNew):

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