Schylar “Zaine” Millen like most 12 year olds was getting ready for Christmas break, when he started to become ill on December 17th. He had a dry cough and was fatigued. After a couple of days of not feeling so well, his family took him to the pediatrician’s office (Dec. 20th). They were sent home with steroids and albuterol. With no signs of improvement and unable to to get in to see their pediatrician, two days later they took Schylar to Cincinnati Children’s Hospital where he was diagnosed with pneumonia and given steroids and amoxicillin (Dec 22nd). All was well until Christmas Eve when Schylar began complaining of his eyes hurting and rubbing them aggressively. Schylar’s lips appeared to be swelling and he complained of the inside of his mouth becoming tender. His parents were becoming concerned, as in the past Schylar had two other undiagnosed episodes of small vesicle/blister like rash throughout his body and oral blister/ulcers and eye involvement. His mother contacted his ophthalmologist
who just, so happened to be working the Emergency Department of the University of Kentucky Medical Center. She was advised to bring him in for an evaluation. Three hours after arriving to the E.D. Schylar’s mouth became filled with blister and quickly erupted into large ulcers. Over the course of 24 hrs his body started to become covered with blisters, hands, feet, throat, etc., his eyes began to swell and produce a thick eye sealing discharge and he was admitted. Approximately two days later he was diagnosed Steven Johnson Syndrome.

Steven Johnson Syndrome is considered a severe rare allergic reaction, affecting the patients skin. The outer layer of skin (the epidermis) literally separates from the dermis layer, the skin basically sloughs off. It affects the skin and mucosal membranes. The body response creates a rash on the patients body, along with blisters, lesions, ulcer like wounds which not only attack the skin but the mucosal membranes typically the eyes, mouth, throat, urinary tract anywhere these membranes exist. SJS patients are considered and treated as burn patients and in severe cases are sent to a burn center. In regards to treating SJS, it has to “run its course” according to our doctor. During this the doctors and nurses try to minimize the pain and secondary infections by the use of pain medicines, steroids, antibiotics, IV fluids, nutrition via a feeding tube and aggressive eye care to save one’s vision. Schylar’s triggers for SJS are not 100% know, but according to his labs they have some answers such as, possible ibuprofen, mycoplasma pneumonia bacteria, antibiotic allergy and even the flu virus. While in hopes of only one trigger, its not the case with Schylar.

This is the worse episode for Schylar, but unfortunately not his first. His first undiagnosed episode was in October of 2013 after begin admitted for pneumonia and then again in April of 2016 in which he was ill with the flu and now (pneumonia). Each episode progressively became worse and the most recent one in April affected his eyes. Desperate to determine what could be happing, Schylar spent his summer visiting immunologist and rheumatologist, in search for answers. Now that they have a diagnose Schylar will need a very thorough follow up by many specialist in efforts to prevent this from reoccurring. He will need to see many pediatric
specialist: immunologist, pulmonologist, dermatologist, rheumatologist, and possible ID doctors in neighboring states of Tennessee and Ohio.

Schylar spent nine excruciating days at the University of Kentucky before being transported to Shriners Burn Center in Cincinnati, OH. It wasn't until he began vomiting blood, that they finally listened to his parents, his allergist and a pediatrician from John Hopkins University that he needed more specialized care. Thankfully, he had these instrumental physicians in his corner. When he arrived in the burn unit things began happen very quickly and it was immediately clear he was exactly where he should have been in the first place. At 2 a.m in the morning a team was awaiting his arrival and began to work on him for the next 4 1/2 hours. Later the same day they sedated him and inserted a feeding tube that extended into his small intestines, an IV to prevent dehydration and administer pain meds and a foley cather, as his urinary tract was also affected. Schylar has been in Shriners for 12 days, as of today. Until the last 48 hours Schylar’s eyes have been shut, as the discharge, swelling, and sloughing of skin, sensitivity to light and pain would keep them sealed shut.




Schylar’s allergist(who has been phenomenal) told him, “Im so sorry buddy. This only happens to one in a million”. While it maybe rare for people to have SJS it is a very horrible and painful thing to watch your child endure. Schylar’s parents tried desperately to get him diagnosed correctly with the early episodes but every doctor they saw said, “NO, its to rare,” when mom ask if he could have SJS. Please research SJS and become aware of the signs and symptoms, as it could happen to anyone.

Take a moment and try to imagine what this 12 year old boy has endured. He even walked with blisters covering his feet, as the RN’s pushed in efforts to keep him going. While he is showing signs of healing, his battle in not over. His family needs to be seen by specialist in efforts to prevent a reoccurrence.

Please consider donating, as Schylar puts it, “No one should have to go through so much pain ever”.The funds will go to covering his medical expenses from U.K.’s hospital stay, medical transport and his extended follow up care at the Cincinnati Children's Hospital and Vanderbilt after leaving Shriners. Any donation really helps. Think about where you spend $25 for example, I know those $5 Starbucks really add up. A donation to Schylar would go towards his medical bills that are already piling up. As expensive as health care is, 9 days as an inpatient at U.K, with a slew of test and a PCA (pain pump) and ambulance ride from one to the other is becoming insurmountable. For all that he has gone through, I don't want his family to also face the burden of finances later on. He will have an uphill battle from here on out and needs our support. His parents have taken leave from work to be by this side through all of this.

Those of you who know Schylar, knows that he is an amazing, caring and loving kid.

For example: (in the burn unit) As Schylar was being pushed to walk and fighting through the pain he began to cry. His mom ask what was wrong? He said,”Mom do you hear that baby crying? I just cant stand it. No baby should have to go through this much pain. Mom, I wish I could take that baby’s pain.” Mom said, “Even with all the pain you are enduring, you would take on more pain to help that baby?” and Schylar cried and said, “YES! MOM.”

Please donate and send him your love!

By: his family & Uncle Todd Wireman