The sound of country music can be heard from the front porch of the Everett family home. Walking through the front door, visitors enter a dimly lit room with walls covered by Winnie The Pooh, Tigger and other children’s book characters that dance above the floor. And against the far wall is a bed that supports a young boy. “The music lets him know that he’s not alone” confides Melanie, the young boy’s mother.

Abbie Keyton, CAP’s case-worker for the Everett family, voices a friendly greeting, but there is no response from the child. His head does not turn to acknowledge Abbie’s presence, and his eyes do not open. His arms and legs are clinched in awkward angles and his breathing is shallow. The boy lying motionless on the bed is named Jeremy.

Jeremy suffers from non-ketotic hyperglycinemia, a rare condition that strikes children at birth. His body is unable to metabolize glycine, a common amino acid found in protein, and the doctors predicted that he would not survive past six months. Twelve years after his birth, Jeremy suffers from seizures, extreme mental disability and severe physical developmental delays. He does not communicate verbally and instead, uses facial expressions to convey his emotions. A slight smile at the sound of his mother’s voice, or a grimace from the pain of a sore that exposes muscle tissue and bone.

The need to provide Jeremy ‘round the clock care limits the family’s income. His father, Aaron, works and takes classes at the local community college to reach his goal of becoming a police officer, while Melanie stays at home to care for their youngest of three sons.
Most of her hours are spent alone with Jeremy. She smiles from ear to ear and chats with Abbie as if they were long-time friends. “Melanie has the best attitude. She’s real nice, real outgoing. She always has a smile on her face,” describes Abbie. But Melinda admits that humor masks the pain of a mother witnessing the daily suffering of her child: “I guess I smile to hide my tears,” admits Melanie.

Melanie has dedicated her life to her son, caring for him as best she can. The cartoon characters on the walls were painted by her own hand, and every day she reads him children’s stories. “I don’t get kisses on my cheeks or hugs around my neck like most moms. But I know that he loves me,” she says of her youngest son.

The Everett’s were introduced to the Christian Appalachian Project several years ago through CAP’s Christmas Basket and School Readiness Programs. Clothes and toys were given to the children during the holidays, and supplies were provided for school. But as Jeremy continued to defy the doctor’s predictions each year, providing the most basic of care became more difficult. In order for Melanie to bathe Jeremy, she would have to lift him from his bed onto a rolling, mesh stretcher and wheel him into the bathroom and lower him into the bath. The constant lifting and stooping has taken a toll on Melanie’s back, and Jeremy can no longer fit into the bathtub while laying on his stretcher, forcing Melanie to resort to bed baths.

Recognizing the need for a solution, CAP enrolled the Everett’s into its Housing Program. During WorkFest, the family’s roof was replaced and an additional closet was built to hold Jeremy’s medical supplies. Most importantly, a shower room was created for Jeremy. The tiled room allows Melanie to roll her son into the bathing area with ease. “I can’t thank them enough. It’s like winning the lottery. It’s worth more than a million dollars to me to get that bathroom done. I appreciate everything,” says Melanie.