Benefit will aid local boy with MLD

The benefit event is Sept. 24 at Emmanuel Community Church.
By WILLIAM K. ALCORN
VINDICATOR STAFF WRITER
AUSTINTOWN -- Joshua's smile seemed to light up his whole body, in the picture of him with his family at a Disney vacation seven years ago -- with his favorite characters, Pooh and Tigger.
Six months after that trip, provided by the Make-A-Wish Foundation, metachromatic leukodystrophy (MLD), a rare, debilitating disease, had robbed him of that smile, as well as the ability to speak, swallow, cough, or do anything that requires muscle control.
But what MLD has not taken is Joshua's will to live, and the belief of his parents, Frank and Sandy Walker of Austintown, that Joshua is a blessing from God. "He is a gift from God that has touched more hearts and lives than any preacher," Frank said.
Frank is a mill operator at Sharon Custom Metal Forming in Farrell, Pa. Sandy is office manager for Patterson Family Eye Care.
At 9 years old, Joshua has survived beyond the three to six years given him by doctors when he was diagnosed in fall 1999 at about 20 months.
Joshua progressed normally for the first 16 months of his life. He loved music and sang and jumped and ran and had a 30-word vocabulary, his father said. His parents began to notice that something was wrong and went to various doctors without getting an answer. Finally they took Joshua to the Cleveland Clinic where the diagnosis was made.
About the disease
MLD is a rare degenerative neurological disease that affects the fatty covering, known as the myelin sheath, that acts as an insulator around the brain's nerve fibers. With destruction of the myelin sheath, progressive deterioration of muscle control and intellectual ability occurs.
The only chance for recovery was a bone marrow transplant, but Joshua's condition deteriorated rapidly, and before a transplant could take place, he was unable to eat or drink or speak. Even a successful transplant would have just stalled his condition, Frank said.
Now, Joshua spends all his time lying down or sitting in his wheelchair. He is fed and receives pain medication 24 hours a day through a stomach tube.
In the near future, Joshua faces surgery to correct scoliosis, in which his spine will be fused. "Joshua has 70 percent curvature of the spine, and when it gets to 80 or 90 degrees, it will press internal organs and make the spine surgery necessary," said his father. Because his muscles have grown so relaxed, the scoliosis has advanced and his right hip is dislocated and his pelvis is tilted.
Physically, Joshua has grown fairly normally and weighs about 50 pounds. His size is beginning to be a challenge for his nurses and family to get him in and out of the bathtub and to his room.
About the benefit
While insurance and other sources pay for much of the nursing care and medication, there are medical expenses and other necessities that are not paid for and that the Walkers cannot afford on their own.
That is the reason for the Joshua Walker Car and Motorcycle Cruise. The benefit event, which last year attracted about 300 car and motorcycle participants and 600 to 700 spectators, is from 2 to 7 p.m. Sept. 24 at Emmanuel Community Church, 6512 Kirk Road.
Among the needs are adaptive equipment in their home and $400 to $500 worth of nutritional supplements per month that the Walkers believe helped keep Joshua alive beyond the doctor's predictions. These, along with excellent nursing care, kept him from developing bed sores and other skin conditions.
Joshua receives nursing from 8 a.m. to 10 p.m. daily from two agencies: Forum Health at Home and Home Care With Heart. Jane Mecozzi of Howland, a licensed practical nurse, is Joshua's main nurse. "She has been with us for five years, and is like part of the family," Frank said.
Projects
The Walkers have a mechanical lift in the bathroom to help get Joshua in and out of the tub. They want to extend the ceiling tracking to enable him to be moved mechanically from the bathroom to his bedroom. The project involves relocating a closet and a doorway and will cost an estimated $5,000.
Outside their home, they have an electric lift that takes Joshua to ground level. The path from the lift to the driveway and sidewalk is gravel and needs to be paved, another project for which they need help.
Frank said he and Sandy try to keep Joshua involved in family life as much as possible. They take him to church once or twice a week and to family events.
Joshua has two older sisters, Chelsea, a junior at Austintown High School, and Stefanie Adams of Niles. Joshua's grandparents, Frank and Gladys Walker of Hartford and Bill and Velma Mieter of New Castle, Pa., spell Frank and Sandy when they go to a function during the 10 hours of the day when there is no nurse.
Also helping the Walkers greatly is their large church family that organizes Joshua's benefit each year.
"The church is very instrumental for our sanity," Frank said. "In a situation like this, you either turn to God or you turn away. So we put it in his hands and trust him fully to take care of Joshua's needs."
At the car and motorcycle show, the Walkers spend the day walking with Joshua from car to car, and present the Joshua's Choice Award.
The Walkers believe Joshua comprehends and communicates by blinking: A short blink for 'no' and a long blink for 'yes.' "That's why we always talk to him and tell him what we are doing," Frank said.
Donations needed
Lisa Loveless, Emmanuel Community Church administrator, said donations are needed for the event in many areas, such as items and gift certificates for the Chinese auction, participant giveaways and door prizes. Other activities at the car show include a 50/50 raffle, bake sale, DJ and live entertainment, food, a hair cut-a-thon and trophies and dash plaques.
Individuals and businesses who want to help can call Lisa at (330) 799-6187 to arrange for someone to pick up their donation; or they can send the donation to: Joshua Walker Benefit Fund, c/o Lisa Loveless, Emmanuel Community Church administrator, 6512 Kirk Road, Canfield, Ohio 44406. Joshua also has a state trust fund set up through the First National Bank.
alcorn@vindy.com