WHAT ARE THE TWO MAIN INGREDIENTS IN A GRILLED CHEESE SANDWICH?

Over the past four years, many of our clients have inquired how they could repay us for the help they had received or for getting them off the streets and into a home. Our reply has never strayed, “Don’t pay us: pay it forward. Do something to help someone else in need.” But, most of our ‘friends’ wanted a cause that would be a group effort. Although there are so many worthy causes in Williamsburg, none of them seem to fit a common bond they could all relate with, until now.

Sara, a friend of our ministry, was seeking employment in the medical field, yet was having difficulty finding a job that met all her needs. As she lost hope, I began helping her search through the classified ads in the Va. Gazette. And there it was beckoning to be seen, “Part time CNA for a 13-year old boy in Ford’s Colony.” Sara called me back a couple hours later to let me know she had an interview the following day, but needed me to do some research for her since she didn’t have her computer set up yet. “Kevin has Niemann Pick Type C disease, but I can’t find it in any of my medical books.” As I started searching for information and reading about Niemann Pick, my heart started to break. I found myself thinking about my own, Tabitha Catherine, whose life of one day ended suddenly due to extreme under-development of her body and organs.

That night, throughout my paper route, all I could think about was Kevin. His angelic face was etched, not only in my mind, but in my heart. Although few websites had information about Niemann Pick, they all had the same paragraph:

It is a neurodegenerative disease that primarily strikes children in their early
childhood years with death occurring before or during adolescence. Happy and
healthy children in their early childhood begin to suffer from a painful and
gradual neurological decline because of damage to the brain as result of the
body’s inability to metabolize cholesterol. This life-robbing disease is not
only painful for these children, but also their parents who experience a
tremendous heartbreak as they watch their children slowly decline both
physically and mentally. No child should have to suffer from such pain. Although
children worldwide are afflicted, research has been extremely limited primarily
because of insufficient funding due to a smaller population of children affected
and lack of public knowledge. Currently, there is no cure or treatment for NP-C.

Neither music, nor phone conversations with my husband could free me from the words that define an unfair and cruel childhood. I kept thinking, “Kevin wouldn’t even have the chance to be homeless!” I know that sounds strange to think, but homelessness would be kinder than this disease.
This was it! This was the common bond amongst the homeless, those who want to repay for their blessings; the cause that is so worthy, we should all want to help Kevin and his mom. Who wouldn’t want to help not just Kevin but all children with NP-C, current and future; who wouldn’t want to help those with Alzheimer’s (the medical studies are intertwined.) I called Sara and told her Kevin was going to be our Easter fundraiser. Usually we do “Love in a Basket” for the homeless’ children in Williamsburg, yet this Easter we want to have a month of events to raise funds for Kevin. What better way to praise God then to celebrate the life Kevin still has with us and the joy his angelic face brings to so many?
Brenda Eadie and her husband had a picturesque life in 1993. A stewardess and pilot for United Airlines, they had just given birth to a beautiful angelic baby boy on Christmas Eve, they had the perfect marriage and now family. Even though Brenda loved being a mother, and Kevin had been seeing a specialist for an enlarged spleen since he was 2 months old, Brenda went back to the airlines within eighteen months after Kevin’s birth. She knew she could have the well-balanced life as wife, mother and career woman. During a flight, she read an article that unbeknownst to her would affect and change her life forever. Ara Paseghian, well-known Notre Dame Coach, had 3 out of 4 grandchildren diagnosed with Niemann-Pick Type C disease. “Being a mother myself, all I could think when reading the article was that I couldn’t imagine their pain.” Little did she know, that article was foreshadowing of what her ‘handsome gift from God’ would experience.
By fall of 1996, Kevin’s enlarged liver remained and specialist thought on-going painful testing could solve the mystery that haunted this beautiful child. New Years of 1997, Brenda’s resolution was to serve out her purpose to become a true ‘MOM” (Mothers on a Mission) as Kevin was diagnosed with Niemann-Pick Type C. What most parents would see as a tragedy, including her husband who saw no relief and just grief, Brenda saw as a fight. A fight for Kevin, a fight for Ara and his grandchildren, a fight for all children and parents who face a cruel fate and a fight for herself. Having no guilt when she heard that she and her husband were NP-C carriers, she used every ounce of energy to research for knowledge, sought doctors, alternative medicines (which took her and Kevin to Hawaii for Botox treatments), fundraisers and awareness. Over the next 10 years, as the cruelty progressed, Kevin’s courage to live grew as he became an advocate for everyone to experience Hawaii, fall in love with baseball and appreciate the little things in life.
Other than God and Kevin’s love for his mother, what keeps him motivated? Baseball! America’s favorite past-time has become Kevin’s ‘breath’. He started off playing T-ball until physically he was not able. Knowing how deep Kevin’s love for baseball was, Brenda approached Mr. Morgan, owner/head of the Peninsula Pilots to give Kevin a chance as one of their batboys. Each season, the Pilots sponsor the Kevin Eadie night, where monies are donated on Kevin’s behalf to the Ara Paseghian Foundation. But, it isn’t the money donated that thrills Kevin,; it is the love for the game, love for the players, the roar of the crowd, the sweet crack of the bat and the dream that one day he will be on the field once again that pumps his heart with such desire and passion.
School days and socialization with friends ended in December as Kevin’s progression became worse. Mobile with a special wheelchair, Kevin could go outside, but allergies and germs are like enemies to his immunity and verbally, Kevin lost his ability to communicate over a month ago. But, none of this interferes with his ability to make you laugh as he enjoys one of his baseball movies or be touched as he communicates his love through his eyes. This angel who lives amongst us in Williamsburg is proof that even though God is out of sight, He does exist. As I watched Kevin interact with those who love him, I realized that he has such a great purpose in this world and how much we could all learn from him, if we took the time, even for a fleeting second, to be touched by his strength, will, love and courage. And like all angelic martyrs, Kevin has gone the extra mile for his love of God, people and other NP-C children by undergoing an extensive and painful lung biopsy in hopes that more studies could bring researcher that much closer to finding a cure.
Life for most of us remains fast and lacking of enough time. But, when I asked Jane, Kevin’s full-time nurse, what Kevin has taught her, she replied, “Patience.” Oddly enough, I understood her reply. Watching her work with Kevin, you see that nothing can be fast in order to keep from causing him more pain on his frail body, yet you also see the underlying extra seconds you get to spend with an angel; angels that are amongst us that so many of us walk past or forget about because they are out of our sight. When talking with others who have been touched by Kevin’s presence in their lives a common reply was given: “We never know how long or short our lives are going to be, but Kevin overlooks the time and enjoys everything and everyone, no matter how simple it may be. Even through the pain, his ability to touch you with his contagious laughter makes you question the priorities you set in your own life.”
“So Sara, how was you day at work?” I asked. “It was good, but I have to tell you about the lunch Brenda made for Kevin. She decided she was going to make him a grilled cheese sandwich. She got the bread and cheese out and actually grilled it! Then she pureed it so it could be fed into his G-Tube,” Sara stated, somewhat confused about this. But, reflecting back to how Tabitha Catherine would have been after all these years, I understood. So what are the two main ingredients in a grilled cheese sandwich? LOVE and DEDICATION!