by Pamela Palongue
any times in life, we start out following one road and then find ourselves at a completely different destination than we had expected. So it was for Jeff and Kara hadley. They probably never could have guessed the journey that lay in store for them. luke hadley was born on August 20, 2006, the first child of Jeff and Kara hadley with a rare disorder called ring 14, a devastating illness with no known cure. luke was unable to eat and had to be fed through a tube. his breathing was done with the help of a ventilator a great deal of the time and he was unable to move or speak. If the hadleys had any expectations of what life would be like for their first born, it certainly had to be reevaluated when they were given the staggering news that luke’s life would be brief. Jeff and Kara began with one simple premise; to give luke the best life possible in the short time he was given to experience it. In order to accomplish this goal, they wanted to spend as much time as possible with their son. This meant working around their job schedules (they are both teachers) in order to spend days and weeks in the pediatric intensive care unit. They understood that sometimes the greatest gift is just being there. During this time, they learned many things about medically fragile children. Jeff hadley says plainly, “I always thought of hospitals as a place where children go to get fixed up and then they come home. I had no idea there were so many children who spend a significant amount of their lives just fighting to survive in the hospital.” And perhaps even more disturbing was the fact that many of these children spent hours and days alone with no family members present. Many times the parents wanted to be there, but work schedules would not allow the time off, the travel time was too great or financial constraints prevented it. Although the child life specialists tried to make it around to spend time with each child, they were often in charge of dozens of children and their time with each child was limited or non-existent.
The Foundation that Luke Built
Jeff and Kara noticed something else during this time. Though luke was unable to speak, he had the unique ability to communicate through his eyes. The hadleys were able to tell when he was happy, distressed, excited or wanted something by his expressive eyes. And remarkably, when another child in the room was crying, luke’s eyes would become sad as if he wanted to help them somehow. This concern for other children would become the basis for the work Jeff and Kara were about to begin. luke passed away on October 30, 2008 and just eight short months later, the hadleys with the help of their community would begin the luke hadley Foundation to help medically fragile children. With the funds raised in the first year, the Foundation has been able to supply the Child life Department of Children’s hospital and the Children’s home of Pittsburgh with many interactive devices. They also have been able to plan many activities and field trips for the kids. local jazz musician lee robinson visited the Children’s home of Pittsburgh and played his saxophone and other instruments for them. later the children had a chance to make their
Spring 2010 | IN Fox Chapel Area |
own percussion instruments and play music. Also at the Children’s home a garden was created, where with assistance the kids planted tomatoes and other vegetables and got to harvest them in the fall. Field trips to Carnegie Science Center, a pumpkin patch and hayrides were also enjoyed by the children. Many times the average person does not realize the tremendous amount of effort and planning that goes into a field trip. These children are on ventilators and other medical devices which must be transported with them, along with medically trained personnel to handle the devices and in case of an emergency. because it is sometimes difficult to relocate a child even a few feet, special mobile play stations have been designed called luke’s Art Carts that can easily be moved from room to room. Some of the devices the foundation provides are extremely important to the children’s wellbeing and happiness. For example, a device called a boardmaker allows a child who is intubated, (a tube inserted in the airway for breathing) to be able to communicate simple needs such as hunger, wanting a book or a toy. Another important device that the luke hadley Foundation supplies are dolls which are approximately three feet tall. These dolls are used to demonstrate medical procedures to both children and parents that will be performed on the child. Jeff hadley adds that these medical dolls have served to calm the fears of parents and siblings as well as the sick child. The hadleys are appreciative of all the individuals, businesses and corporations who have donated their time and money to the foundation and especially the Fox Chapel School District who chose the luke hadley Foundation as recipient for their annual telethon, raising over $33,000. These simple devices and activities are helping to make a difference and to bring joy to children whose lives are defined by endless testing and medical procedures. Sometimes beautiful things are birthed from tragedy. Jeff and Kara hadley are sure that luke wouldn’t have wanted it any other way.
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