”
I really got my groove on tonight!
”
18-year-old Gilroyan Felix Kirchner said as he exited Chevy’s
Restaurant Tuesday evening.
“I really got my groove on tonight!” 18-year-old Gilroyan Felix Kirchner said as he exited Chevy’s Restaurant Tuesday evening.
He was bathed in perspiration and breathing heavily, but he was on a singing high. He had just finished three hours of karaoke night, which culminated in a singalong with six girls who are members of the Gilroy High Mustangs softball team. As they cheered him on, Felix danced like he was a super-energized Justin Timberlake. The whole room erupted into cheers, applause and shouts of approval.
All of us face challenges in life, but some of us enter this world with the deck already more stacked against us. On Saturday, Gilroy’s very brave Felix Kirchner will participate in a Walk-Along – a fundraising activity for those fighting a genetic condition called Prader-Willi Syndrome.
It is a lifelong condition that Felix knows a lot about, since he was born with it. PWS is a complex birth disorder that affects appetite, growth, metabolism, cognitive function and behavior. According to the Prader-Willi Foundation, this random genetic syndrome affects the 15th chromosome and makes it impossible to recognize hunger and appetite normally. People with PWS suffer from insatiable hunger and will never have control over their craving.
Their brains just can’t register that they have had enough to eat. They require considerably fewer calories – 30 to 50 percent less – than the average person, so they should never be put in a situation where they are left alone with food. It is the most common genetic cause of obesity that has so far been identified. If left unmanaged, it leads to obesity-related illnesses and premature death.
“When I was born I had this happen to me,” Felix said. “My mom, doctors, and therapists had to work together to take care of me. I slept all the time because I was always tired, and it took a long time to move as other kids do, because I have low muscle tone.”
Yet, in spite of all this, Felix graduated from Gilroy High School last year and is currently attending Gavilan College’s Career Preparation Program. One way Felix combats the effects of the disease is by being very physically active. He is a competitive bowler, and he holds a blue belt in Kenpo Karate.
And then there’s fishing. He is very proud of the golden fish trophy he won the first weekend in May for his participation in the Sportsman Chefs Fishability Day at Hilltop Spring Ranch. The Gilroy Parks and Recreation coordinates the event with the charitable men’s club which benefits mentally and physically challenged teens and young adult athletes.
“I caught six fish – three bass and three trout!” Felix beamed.
Felix lives life to the fullest. He sings in his church choir and volunteers to help with Sunday school class. He and his girlfriend (who was born with cerebral palsy) attended the Winter Ball at Gilroy High School, where she is a student. They also enjoyed the holiday lights at Gilroy Gardens, where Felix delighted in pushing her around in her wheel chair.
Last week Felix enjoyed a trip to Disneyland sponsored by the Gavilan College Disabled Services and HOPE. He sold gourmet coffee and Valentine’s Day teddy bears to raise the necessary $220 for his participation in the trip.
“I brought in $290,” he told me, beaming with pride. “I had a blast. I loved Space Mountain. I kept my eyes open the whole time.”
Felix wants people to know that “there are families that PWS happens to that need help. They need help to find doctors, support groups, and good teachers.”
There is no cure, but there are researchers and doctors dedicated to helping those with PWS to live a better life. Already having signed up more than 20 people for pledges to raise money to combat PWS in his latest fundraising endeavor, Felix is an inspiration to all.
Walk-Along for Prader-Willis
A picnic, music, kite flying and fun for kids
-Where: Berkeley Marina of Caesar Chavez Park
-When: 11a.m. Saturday
-Donations: Prader-Willi California Foundation, 514 N. Prospect Ave., Suite 110-LL, Redondo Beach, CA, 90277
-Details: (800) 400-9994 or www.pwcf.org/walkingforpws.htm
