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Living with MS

Personal Connections to MS
   

 

Kaley Zeitouni

 
Kaley (third from left) and fellow YAMS
Kaley Zeitouni was just 12-years-old when she was diagnosed with multiple sclerosis. Her symptoms began on a typical pre-teen day. It was a holiday, and Kaley was sleeping over at a friend's house, lightheartedly camping out in sleeping bags under the stars. When she awoke in the morning, she was sick to her stomach—and unable to walk.

At first thinking she was coming down with the flu, all she wanted was her mom, Jo, by her side to do all those things that moms do to make you feel better. But, shortly after her mom arrived, Jo whisked her off to the hospital. After seeing a battery of doctors who ran what seemed like endless tests for over a week, an MRI and a spinal tap ultimately showed a definitive MS diagnosis.

Now 17, Kaley considers living with the disease to be a blessing in disguise. In large part, MS has helped her to achieve the level of clarity, wisdom and focused leadership that most people work a lifetime to achieve.

Today she is the founder and executive director of one of the only non-profit organizations dedicated to raising awareness about multiple sclerosis specifically among children and teens. The organization is aptly named Youth Against MS.

Gina Portman and Kaley with Kaley Bear, designed by artist Sandy Knapp for the Annette Funicello Angel Bear Series.

YAMS, Inc., which has an official board of directors and is run completely by people in high school, has raised over $115,000 since it first began as an MS Walk team in 2000. The goal in 2004 is $100,000. All of the proceeds have been directed toward the National MS Society to support MS research and fund services to enhance the lives of people with MS. Kaley also speaks to teens and adults from around the world about her personal experiences in living with MS.

Kaley's remarkable achievements and resolve to find a cure for MS in her lifetime have inspired many people, among them Annette Funicello and her daughter Gina Portman. Annette too is fighting the devastating effects of MS. As a result, the Annette Funicello's Collectible Bear Company has designed a very special angel bear in Kaley's honor. The bear was created by celebrated teddy bear artist Sandy Knapp and Annette.

Kaley Bear

The Kaley Bear sports the National MS Society lapel pin in its ear. Annette has added a new MS bear in 2004, an angel bear honoring Babs Pasternack, an MS Walk Team captain and volunteer with the Southern California Chapter.

A high school senior, Kaley is grooming her brother Leor (who is the MS Walk Director on the YAMS board), age 15, to take her place. To keep the program self-perpetuating and geared toward young people, the organization started Junior YAMS, Inc. Each board member mentors a younger person for a year. That junior member then takes his place when they graduate.

About living with MS, Kaley says, "MS was given to me for a reason. It was meant for me to learn from it, grow with it and touch others. It is giving me a purpose in life."

Kaley is now a senior in high school, and is applying to Reed College in Oregon, UCLA and Stanford University, among others. She has aspirations to become a doctor who specializes in alternative medicine and a motivational speaker. Congratulations to Kaley on being a awarded a 2004 National MS Society Scholarship!

For more information about Youth Against MS or how to join or sponsor Kaley's MS Walk team, visit www.YouthAgainstMS.org.

 
   
Additional Information...
   

MS Walk

   
Pediatric MS
   
Kaley is also featured in the book My Story: A Photographic Essay on Life with Multiple Sclerosis by Amelia Davis. Order through Demos Publishing
 
 
  Last updated January 18, 2006  
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