by Jill Funke

While mitochondrial diseases are usually not detected until a child is a little older, physicians began to suspect that Alec Ideker of Harrisburg had some form of the condition when he was only 5 weeks old. Mom and dad, Stephanie (Blauwet) and Brad Ideker, were alarmed when the first day from the hospital, their tiny baby boy began having seizures. At just over one month of age, Alec was thought to have complexes 1, 4 and 5 of mitochondrial disease. As the couple researched the condition, and gathered information from the medical professionals, the Idekers learned that mitochondrial diseases happen after failures of the mitochondria, which are specialized compartments in almost every cell of the body. Mitochondria create more than 90% of the bodies energy, which fuels growth and sustains life functions. Upon the failure of the mitochondria, cells have less and less energy and can experience injury and death. As this process continues throughout the body, systems will fail. The cells of the brain, heart, liver, skeletal muscles, kidney and endocrine and respiratory systems see the most damage. Because of the damage and cell death that accompany mitochondrial diseases, the life expectancy of those who have the condition is 4 to 10 years.

At three-years old, Alec experiences multiple types of seizures including infantile spasms seizures. Since birth, he has never had a day free of seizures, and there are many days when there are too many seizures to count. In addition, Alec has problems with his respiratory system, gastrointestinal system, and neuromuscular system. He is fed through a g-tube, cannot walk, crawl, roll or talk. However, this special little boy has the ability to touch the hearts of his family and everyone who meets him, and those close to him have learned to communicate with him both verbally and nonverbally. Alec’s big brother, Aaron, loves him with his entire heart. At age five, Aaron has never been jealous of the attention his brother requires each day. Stephanie says that he realizes the limitations that Alec has and the family discusses the time when Alec will go to heaven and meet Jesus with a new working body.

When Alec was well enough to leave the hospital, he and Aaron began meeting some very famous people and characters. Alec’s favorite was Donald Duck, who held Alec’s hand and made a real connection with him. The family also got to visit Sea World and Universal Studios. During their vacation, the Idekers were thrilled to be able to stay at Give Kids the World.

Give Kids the World is a nonprofit village where Make-A-Wish families often stay when they visit Disney World. Stephanie raves about the village and says it will not soon be forgotten. The family will also remember forever their Make-A-Wish trip, as it was an experience of a lifetime for both Alec and Aaron.