A NOBLE COLLECTION.

It all started with a letter to Santa. 9-year-old Andy Noble had a special request--he wanted his kidneys and legs to work, and he also wanted a real fire truck. Andy's letter to Santa was printed in the local paper in Eastpointe, Michigan. On Christmas morning, the Eastpointe Fire Department pulled up with seven firefighters aboard and whisked Andy off for a ride in the city's fire truck. After the joyous ride, the firefighters presented Andy with an official firefighter's coat with many colorful patches. Although Santa could not cure Andy's medical condition, the letter had sparked an outpouring of community support for Andy's interest in collecting memorabilia from police and fire departments.

According to Andy's mother, Laurie, the mail and visits that he receives have been beneficial to his overall health and mental well-being. Laurie became Andy's foster mother when he was only 2-weeks old. He was born prematurely-weighing only 3 pounds, and was diagnosed with fetal alcohol syndrome. He was also born with kidney abnormalities and spinal deformities. Later, Andy would be diagnosed with a seizure disorder called Lennox-Gastaut syndrome (see side bar) along with central apnea, and severe reflux. He is tube-fed, uses a ventilator at night, and relies on a brace up to his waist for support.

"Andy was not expected to celebrate his first birthday, let alone his ninth. So, as I love and care for him, I work to help him reach his goals now. There may not be a later," explains Laurie. This is an all too painful scenario for Laurie, whose biological son Chris, died at the age of 5 from complications of central apnea. Laurie has one other biological son John, who is now 20, and she has mothered six other children either as a foster parent or through legal adoption.

"As a child, I grew up having foster sisters and brothers with special needs in my home. My parents, Lou and Loyal, taught me how important it was to show love and affection to everyone." The family works together in providing care for Andy, who sometimes has up to 100 seizures a day. Laurie has elected to home-school him because of his complex medical needs. Andy is currently learning to spell his name, and uses sign language as his method of communication.

"Caring for Andy has been like a roller coaster ride. We are constantly striving to go up hill, but once we get to the top, we have a devastating crash down to the bottom. His health fluctuates so much from day to day, that we look for anything that might keep his spirits up," explains Laurie. According to Laurie, Andy dreams of one day becoming a police officer or fire fighter. "I have never told Andy that he cannot become a professional in these fields because I believe goals and dreams are far too important," reminds Laurie.

Visit from a special friend

One example of a police officer overcoming the odds is Detective Joe Viola (EXCEPTIONAL PARENT Role Model, May 1999). Born without a right hand, Joe overcame many difficulties and barriers to become a corrections detective with the Bergen County, New Jersey, Sheriff's Department. Joe was contacted about Andy's quest to build a patch collection by his former colleague and retired Sheriff's Department sergeant Michael Longobardi, who now works for EXCEPTIONAL PARENT. These two exceptional police officers teamed up with EP's President, CEO, and Publisher, Joseph Valenzano, and sent a letter out to law enforcement, fire fighter, and ambulance departments around the United States asking for patches and other memorabilia to add to Andy's collection.

The response was amazing! Over 800 hats, patches, t-shirts, jackets and badges came pouring into the EXCEPTIONAL PARENT offices. In May, EP and Detective Viola flew out to present Andy and his family with the memorabilia. "Andy's big smile of appreciation made the day one of the highlights of my life," remembers Viola. As for Andy, he now has an even bigger collection to be proud of--his collection of caring friends!

Special thanks to all of the departments and individuals who contributed to Andy's collection. Patches may be sent to: Andy Noble, 29045 Dembs, Roseville, MI 48066.

Lennox-Gastaut Internet Support Group: Speaking up for children

by Patricia Kroboth

Lennox-Gastaut syndrome (LGS) is a form of epilepsy which typically does not come under control with medications. "In this regard, the Lennox-Gastaut syndrome carries a `double whammy'," according to Douglas Labar, MD, PhD, director of the Comprehensive Epilepsy Center, New York Presbyterian-Cornell Medical Center, New York City. "First, the seizures, which typically do not come under control with medications, include `drop attacks'. The sudden falls that characterize this seizure type often result in injuries. Second, affected persons typically have moderate to severe intellectual impairments, making them particularly subject to the sedative side effects of antiepileptic medications." People who have LGS typically have moderate to severe intellectual and physical impairment, and will continue to be dependent for their daily care throughout their lives.

There is no known single cause for the disorder. Research is badly needed to understand this condition. As parents, we continually search for answers and better forms of therapy. One thing we have found is each other. There are approximately 130 LGS families linked by a newsletter and a web bulletin board on the Internet. We share good news, bad news, information, experiences, and most of all, we share our feelings. In each other we have found an oasis from the daily conflict of our lives. Even though most of us will probably never meet, we are family.

We understand the shared complexities of a family's life torn apart by uncontrollable seizures. We share frustration and anger in our continuing struggle for a better quality of life for our children. We also face difficult situations, such as planning for a future when we can no longer provide the necessary care.

And we never forget to share a laugh. We celebrate milestones unlike those of other parents. We may not ever cheer at a soccer game, but when a heretofore nonverbal child says "Momma" for the first time, we are witness to a miracle.

We are not an advocacy group. We are parents speaking for our children who are silenced by the devastation of Lennox-Gastaut syndrome. We just want them to be heard.

If you would like to join us, subscribe to our newsletter by contacting: Candace Lovich, 6443 Riggs Place, Los Angeles, CA 90045. To join the Internet listmates, send an e-mail to: [e-mail], and in the subject heading write: subscribe lennox-g.