Helping Luke

Precious Luke Johnston was born on March 2, 2017 with a very rare genetic disorder called Saethre-Chotzen Syndrome, a condition characterized by the premature fusion of bones. In his first several months, Luke has already endured countless exams by numerous medical specialists across the state. Luke’s symptoms to date include:

• Scoliosis
• Fused ribs
o Surgery required if it begins to interfere with lung development
• Webbed fingers
o Surgery in January 2018
• Clubbed feet
o Currently wears a custom brace when he sleeps
• Hearing loss
o Has hearing aides, hearing therapist and will be having surgery to replace the fused bones with prosthetic bones
• Tethered spinal cord
o Surgery in March or April 2018


Luke has already had 4 procedures under anesthesia, countless imaging and testing....he has an average of 2-3 appointments a week. He has been or is currently being seen/treated by three hospitals, an ENT, genetics specialist, urologist, neurosurgeon, an ophthalmologist, a pathology group, plastic surgeon, and an orthopedic surgeon. He also has a hearing therapist and a physical therapist. Reading this list was so overwhelming to me. I cringe at the thought of the constant influx of bills waiting in their mailbox each day. This doesn’t include mom’s surgery and a four night hospital stay after a postpartum complication.

The Johnston's have spent countless hours speaking with their insurance provider and researching and applying for financial assistance. Even with the assistance granted, their medical bills add up to over $20,000. This does not include the possible four upcoming surgeries in the next eight months or travel expenses. This breaks my heart. Not only for the sweet child who has to endure these procedures but for the physical, emotional and financial burden this places on a mom and dad who devote so much of their energy to not only their own children, but the children of the community as well. I know this, as my son is a product of their positive influence.

My son was NOT excited for kindergarten but on that first day, I watched as Amy Johnston bent down, looked my frightened son in the eye, smiled and made conversation. From that moment on, she went above and beyond what any teacher I have ever encountered does for her students (and I come from a family of teachers!). During the same year, we introduced him to karate at the Academy of Okinawan Karate, headed by Joey Johnston. As if Joey’s rank and bio isn’t impressive enough, his passion for karate, positive reinforcement of self-discipline, and patience with the children truly sets him and his school apart.

Joey and Amy pour into the lives of the children of our community in such a positive way. I can’t help but feel it’s our turn to pour into them. Please, pray for Luke, his doctors, and his parents (and big sister Ella (2)) and consider contributing to the medical fund for Luke. Every dollar helps to ease the financial burden of Luke’s medical needs and allows Joey and Amy the ability to put all of their energy toward the health and happiness of their two beautiful children.

Thank you so much for taking the time to read Luke’s story and considering donating to this precious baby’s medical needs.