|Make-A-Wish grants dream of local child struggling with rare disease|
|Patti Sells | News-Telegram Feature Editor|
April 7, 2006 - After 26 years, dreams are still coming true for young children with life-threatening illnesses thanks to the Make-A-Wish Foundation's 71 chapters and more than 25,000 volunteers that serve virtually every community throughout the United States.
In June of 2005, Susan Lennon, a financial advisor in brokerage services at Alliance Bank for the last three years, joined that special group, making her the first Make-A-Wish Foundation "wish granter" from the Hopkins County area.
"I really felt a calling," said Lennon, who resides in Miller Grove, where she knows of two local high school students living with critical illnesses. "I knew there was a need for this in our area. It's just incredible to be apart of something so big and so fulfilling."
The Make-A-Wish Foundation began in 1980 when members of the Arizona Department of Public Safety went above and beyond the call of duty for 7-year-old Christopher James Greicius, who suffered from a terminal illness, but dreamed of one day becoming a police officer.
The Arizona DPS made that little boy's dream come true on April 29, 1980, when he was escorted by a DPS helicopter to the station where he was sworn in as the first-ever, and only, honorary state trooper in the state's history, complete with a tailored highway patrol uniform made especially for him.
The very next month, Chris' condition took a turn for the worse, and he ended up back in the hospital, soon after losing his battle for life. Continued From Page One
Officers Frank Shankwitz and Scott Stahl, both of whom played special roles in granting Chris' wish, endured the sad assignment of attending the boy's out-of-state funeral as representatives of Arizona's law enforcement agencies. On the trip back to Arizona, the men realized that there must be many other children dealing with similar circumstances who would benefit from wish experiences of their own.
With that thought in mind, the idea for Make-A-Wish was born.
Since 1980, Make-A-Wish has granted more than 144,000 wishes to children, ages 2 1/2 to 18.
"These kids don't necessarily have to be terminal to get a wish," explained Lennon. "It's absolutely awesome to be able to fulfill their hearts' desire with something that maybe, just for a little while, will help them forget they're ill."
Lennon said she has been blessed to have granted five wishes within her geographic territory during the nine months she has been involved with the non-profit organization.
"I get a big charge out of doing this," Lennon said. "I can't think of anything more rewarding, just seeing their smiles and the light in their eyes is my reward."
One of the area's latest wish recipients is 6-year-old Holdan Culpepper, the son of Jason Culpepper and Amy and Dale Perkins, all of Sulphur Springs. Holdan was diagnosed two years ago with juvenile dermatomyositis, an autoimmune disease in which the body's immune system attacks its own cells and tissues.
Since his diagnoses, Holdan has been in and out of hospitals, subjected to all types of tests, treatments and medications, in addition to learning to live with his illness, a rare disease that affects only three in 1 million children. The condition causes extreme fatigue, and results in weak and painful muscles that make walking difficult and common childhood activities like climbing and running almost impossible.
According to Amy Perkins, Holdan even has trouble swallowing, which makes eating unenjoyable, as well.
"Now I know why he never wanted to eat," said Amy. "It was just so uncomfortable for him to even swallow."
Amy said that she first noticed something was wrong just after Holdan received his immunizations to start prekindergarten. Things he could normally do became difficult.
"He couldn't walk across the room without falling," she explained. "I guess he didn't really know how to communicate that he hurt. I don't know if he even knows what it's like not to hurt. He's been through so much. He's been a tough little guy, and he deserved something special."
The family applied for a wish the week after Christmas, according to Amy, who said tests showed Holdan to be in remission.
"He finally felt good enough to enjoy something," Amy said. "And since we weren't tied down with treatments and doctors' appointments I just thought he needed something to encourage him and reward him for all that he's been through."
She said when she asked him "If he could do anything in the world, what would he want to do?" he responded with "Go to Chuck E. Cheese."
"Of course he couldn't wish for something he didn't know existed," laughed Amy, who introduced Holdan to several ideas over the Internet.
As soon as he saw Disney World, however, "THAT WAS IT," according to his mother. (She gladly obliged his wish to go to Chuck E. Cheese shortly before the Disney trip.)
Visiting a Disney park is the foundation's most requested wish, according to reports, and Holdan's wish was quickly granted due to special circumstances.
"We needed to go while he was feeling good," said Amy, who explained that her son was also diagnosed with vitiligo and can't be out in the sun. "He has to wear lots and lots of sunscreen. He can't spend summers swimming and playing baseball like other little boys."
Lennon showed up at their house in January bearing hats, T-shirts and tickets.
"They are such a neat and loving family," Lennon said. "It never fails to amaze me to see the strength that these families have when they're up against such extraordinary challenges. You just want to do anything you can to help lift them up."
Holdan, two of his brothers, Hunter, 10, and Cade, 3, and Amy and her parents, Gary and Rachel Wade (also known as Mimi and Grumps) of China Spring all went on the all-expense paid trip to Florida on Feb. 11.
"Holdan got to ride up front with the pilot and everything," said Amy. "We were treated like royalty the whole time. As long as Holdan had his Make-A-Wish button on, we didn't have to wait in any lines anywhere, and absolutely everything was free."
The family stayed at the Give Kids The World village, a 51-acre nonprofit resort that partners with more than 300 wish-granting organizations from around the world. During their 7-day adventure, the family visited DisneyWorld, Sea World, Animal Kingdom, Magic Kingdom, Universal and MGM studios, as well as Gator Land.
"It was just an awesome trip," Amy said. "It was a good break for everyone. And it is something he will always have and remember. He earned this wish."