Wish Winner Wants To Help Another Child

POTSDAM - Two years ago, Shawna L. Cummings had her wish come true: a week-long trip to Florida with her family, all-expenses paid.

Now the 7-year-old wants to give another child their dream vacation.

Her goal is to raise $6,000 for the Make a Wish Foundation, a non-profit organization that grants wishes to children suffering from life-threatening illnesses.

In March 2008 the organization's Central New York chapter flew Shawna and her family to Orlando, Fla. where they visited Disney World, Sea World and Universal Studios. They fed dolphins, had lunch with Disney princesses and created life-long memories.

"Since I got a wish, I wanted to let another kid have a wish," said Shawna, a second grader at Lawrence Avenue Elementary School.

Grown-ups and college students have helped her organize Shawna's Walk for Wishes, a three-mile walk scheduled for Oct. 9 at St. Lawrence University's outdoor track, Canton. Registration starts at 9 a.m. followed by the 10 a.m. walk which may become an annual event.

At two weeks old, Shawna was diagnosed with a rare metabolic disorder called MCADD, which stands for medium chain acyl-coenzyeme A dehydrogenase deficiency. The condition is genetic.

"Her body doesn't have the enzyme that breaks down stored fats," explained the girl's mother, Melissa A. Cummings. "There is no medicine for this and there is no cure. All we can do is monitor it."

Shawna is also the daughter of Douglas M. Cummings, a Massena-based state trooper. Mrs. Cummings teaches seventh grade science at Norwood-Norfolk Central School. Shawna's siblings include Vincent M. Dominy, 18, Seirra G. Cummings, 8, and Zachary R. Cummings, 4.

Because of the disorder, if Shawna's blood sugar drops too low, she's in danger of suffering a seizure or heart attack because her body can't rely on its fat storage for sugar, Mrs. Cummings said.

That hasn't happened, but family members don't let their guard down. They regularly use a glucometer device to make sure Shawna's blood sugar is high enough. Each night Shawna is fed three tablespoons of cornstarch mixed with milk because it breaks down slowly enough to get her through the night.

"We are on top of this 24-7," Mrs. Cummings said. "We keep a glucometer in the car, my purse, the house and at school."

Every six months Shawna has blood work done to make sure fat has not built up around her liver and heart. She also makes regular trips to Albany where she meets with a physician who specializes in the disorder.

When Shawna vomits, like when she has a flu bug, she often ends up at Canton-Potsdam Hospital where she's hooked up to an IV to bring her blood sugar levels back up. She spent one Christmas there after waking up sick in the wee hours of the morning.

"Winter is my puke season," Shawna chimed in matter-of-factly during an interview at her Route 11 home.

Mrs. Cummings said the trip to Florida was a godsend for her family which was under a lot of stress. Shortly before the trip, the Cummings learned their son, Zachary, suffers from a mitochondrial disorder, which is also genetic. He was 2 at the time of the diagnosis.

"It had been a really rough year," Mrs. Cummings said. "That trip helped rejuvenate us. We came back feeling that we could manage it all."

The family stayed at Give Kids the World Village, a 70-acre resort near Orlando that accommodates children with life threatening illnesses and their families.

Mrs. Cummings said after Shawna wanted to raise money for another child, she sought help from SLU's Center for Civic Engagement, where a family friend, Julie L. Johnson, is employed as center manager. Members of the university's Chi Omega sorority and other volunteers have taken on the project with enthusiasm.

During the walk, another sorority, Kappa Delta Sigma, will coordinate children's activities such as pumpkin painting, basketball toss, face painting and refreshments. A special website has been set up where people can register to walk and track their pledges. It can be found at: http://maw.kintera.org/shawnaswfw.

Those interested in registering or making a donation can also contact Mrs. Cummings at mndcummings@yahoo.com or Ms. Johnson at the SLU Center for Civic Engagement, jjohnson@stlawu.edu, or by phone, 229-5095.