St. Louis ALS Community Welcomes Breadth of Hope

Every 90 minutes, someone in the United States is diagnosed with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, a motor neuron disease that affects nerve and muscle functionality.

And according to the The ALS Association, St. Louis Regional Chapter, although ALS is most prevalent among individuals between the ages of 40 to 70, it can strike at any age, changing the lives of every member of their families.

St. Louisan Drew Stewart was an intern at a Victoria, Texas, newspaper when he first met with a father with ALS and his family. Touched by their incredible bravery, Stewart morphed a two-minute news story into an eight-minute video and, eventually, a full-length, self-produced documentary.

“The story was so full of emotion and compassion that I knew it had to be expanded into something larger,” said Stewart via email. “So we continued filming and eventually we came across two more ALS patients in town who we decided to include in the final film.”

On April 27, Stewart’s award-winning work, Breadth of Hope, will make its St. Louis debut at the Tivoli Theatre, introducing St. Louisans to the families who impacted this young filmmaker’s life.

In Breadth of Hope, viewers will meet three individuals battling ALS, including Pastor Bill Hassel and Carolyn Shimek. But the story that will truly touch parents most is that of Craig Fox, whose two teens, Tanner and Bailey, became part-time caregivers to help their beloved father in his day-to-day activities.

Said Stewart about the Fox children, “The most amazing thing is that you never hear the kids complain. They realize the situation they’re in, but they do what they have to do to help their father in this critical act. It’s an act of love to which I’ve never seen. I think kids could learn a lot about love and commitment to your family by watching the film and seeing Tanner and Bailey.”

Hope here at home

A portion of the proceeds from the Breadth of Hope screening in St. Louis will go toward The ALS Association, St. Louis Regional Chapter, which in 2010 provided services and support to 372 families in eastern Missouri and central and southern Illinois.

According to Mary Riggs, director of patient services and chapter programs, the chapter offers 28 in-home programs free of charge to families. Because ALS is such an individualized disease, a case manager is available to each home, helping to maximize a patient’s functional capabilities, provide guidance to his or her family and reduce the stress and financial strain.

In working closely with these families, the chapter recognized the need to help children of ALS patients whose lives are filled with confusion and uncertainty.

“When a parent has ALS, children grieve the loss of activity level with a parent, sense the fear in their parents, and question life as they know it,” said Riggs via email. “Because ALS is a progressive disease, change happens over and over again — uncertainty becomes the norm — and children crave structure. This creates chaos and sometimes kids need help defining coping styles and selecting the best mechanism to have their voices heard. Sometimes, so do parents.”

The chapter created an activity book in 2000 as a hands-on tool for counselors and parents to help children understand what is going on with their mother or father and over time developed a loss and grief manual for patient, parents and children of all ages.

But most remarkable, in 2006, the chapter launched an anticipatory grief counseling program for kids, which has since been modeled by other ALSA chapters around the country.

Explained Riggs, “Counselors meet with kids and provide a safe outlet for them to process what is happening in their lives and help them find balance in an uncertain world. In addition, this program works with the family unit as a whole and provides education about ALS.”

On April 27 at 6 p.m., you can help the St. Louis Chapter in its mission and experience a night of incredible film by joining Stewart at the screening for Breadth of Hope. Tickets are $15, and children age 12 and under are free with an adult admission. For more information, visit www.breadthofhope.com.

For Stewart, the film has forever changed his outlook on life. “I've said multiple times that even if all the footage fell into an abyss and the film was never finished this still would have been one of the most beneficial experiences of my life. When you're in a situation like ALS you quickly learn that your future is uncertain so all you truly have is today, and these people in the film do everything they can to make the best of it. From them I've learned not to worry about trivial things. What's most important is to enjoy the present and the things that matter most — friends, family, and love.”

By Nicole Plegge, Lifestyle Blogger for SmartParenting

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Metro East mom Nicole Plegge has written for STL Parent for more than 12 years. Besides working as a freelance writer & public relations specialist, and raising two daughters and a husband, Nicole's greatest achievements are finding her misplaced car keys each day and managing to leave the house in a stain-free shirt. Her biggest regret is never being accepted to the Eastland School for Girls. Follow Nicole on Twitter @STLWriterinIL 

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