The illness of a child is oftentimes one of the greatest tests a family can face. The mental, financial and spiritual toll it places can be life altering.
The Murray family of Indianapolis recently experienced, and conquered, such a test.
Meet Eugene, Alicia, and their children Lauren, 14, Sidney, 11 and London, 5. Earlier this summer, Lauren acquired Stevens-Johnson Syndrome, a rare skin disease that has the potential to be fatal.
Members of the Indianapolis Recorder Newspaper editorial staff sat down with the entire family and learned how a “village” from the family’s hospital, church and school rallied together in support of Lauren Murray.
Facing the unknown
Last summer, Lauren had been undergoing treatment for a kidney infection and was taking standard antibiotics to eradicate her symptoms. However, on Tuesday, July 27, she began complaining about back pain.
“Initially I thought she was putting on because she never gets sick. But when she continued to complain about her back I instantly went into mother mode. I asked her, ‘Are you still taking those antibiotics?’” said Alicia. “It was a 14-day course of therapy. I could tell she had slacked off.”
She also noted that Lauren exhibited cold symptoms.
Alicia continued to provide Lauren with ibuprofen and encouraged her to continue with her kidney infection drugs.
Later on that week, Lauren said she noticed swelling in her lips but didn’t pay it much attention until Saturday morning when she noticed increased swelling.
“I woke up and my eyes were burning. And I had a blister inside my mouth,” said the Tindley Collegiate Academy sophomore.
When Lauren’s swelling magnified, her mother decided to take her to St. Vincent Health. There, they told Lauren she was experiencing an allergic reaction, instructed her to stop taking any previous drugs and told Eugene and Alicia to keep an eye on her symptoms. Doctors also said if Lauren was to be re-admitted, she’d be treated as a burn patient.
Saturday evening Lauren’s condition worsened. Her face was extremely swollen and her visible oral blisters were oozing fluid.
“Every time she woke up, I took a picture,” said Alicia.
Around 5 a.m. Eugene and Alicia took Lauren back to St. Vincent. She was immediately diagnosed with Stevens-Johnson Syndrome.
According to the Mayo Clinic, Stevens-Johnson Syndrome is a rare, serious disorder of the skin and mucous membranes.
Alison Klenk, a dermatologist at Eskenazi Health and assistant professor of clinical dermatology at IU School of Medicine said it is so rare, only 5 people per million are estimated to have Stevens-Johnson Syndrome per year.
It also spans all ages, ethnicities and races – anyone can get Stevens-Johnson Syndrome.
“We don’t know what predisposes you to it, but it happens with normal occurrences like bacterial and viral infections, some antibiotics. A number of things can make it happen,” said Dr. Christopher Obeime, a board certified dermatologist who is currently monitoring Lauren’s condition. “If we knew how it happened, we’d win the Nobel Prize.”
Klenk adds that Stevens-Johnson Syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. The top layer of the affected skin dies and is shed – resembling the condition of a burn patient.
“Normally our skin helps hold water in our body. When you have part of your skin missing, fluids can escape rapidly. That’s the same thing that happens in Stevens-Johnson Syndrome,” said Klenk.
Stevens-Johnson Syndrome can be painful.
Use of the drug Bactrim, an antibiotic typically used to treat ear infections, urinary tract and other infections, is oftentimes linked to Stevens-Johnson Syndrome. Viruses can also cause it.
“There could be an antibiotic you’ve taken 10 times before and all of a sudden you take it and get this. Drugs like Tylenol, Advil or Motrin can cause it. Penicillin can do it, seizure medicines and medicines we use for gout can cause it too. We don’t know the answer,” said Obeime, adding that research is underway into causes and treatments.
Although Stevens-Johnson Syndrome can be fatal, Lauren’s family never thought their daughter would die.
All Alicia and Eugene could do was keep their daughter as comfortable as possible. “I don’t remember a lot of stuff that happened in the hospital, but it hurt to move,” said Lauren. “My skin was very tender.”
In the meantime, her parents continued to research their daughter’s condition.
“When you start Googling Stevens-Johnson Syndrome the worst pictures pop up. You think ‘this just can’t happen.’ Some of these people are totally unrecognizable,” said Eugene. “I felt helpless, but I kept encouraging her.”
His encouragement was soothing to his daughter’s soul, but not her body. It became necessary for Lauren to be admitted to the Intensive Care Unit at St. Vincent. Her swelling, blisters and lesions were now internal, and it was difficult for her to breathe.
Obeime states that though Lauren’s condition seemed bleak, she was not on the fatal end of the Stevens-Johnson Syndrome spectrum.
“There’s a big range of Stevens-Johnson. Erythema multiforme is on the low end of the spectrum and Stevens-Johnson is more in the middle,” said Obeime. “There’s also a condition called Toxic Epidermal Necrolysis or TEN, the severe part of the spectrum. What you are trying to do is not get to that point.”
On a scale of one to 10 (10 being the worst case scenario), Alicia said Lauren was about a six.
Lauren was given an Intravenous Immunoglobulin treatment, also known as IVI, as her condition progressed rapidly.
“Not only was there swelling, but her lips were beginning to get dark and discolored. It was started to spread on her skin, arms and back,” said Alicia.
The IVI treatments worked and Lauren’s condition began to improve. She was visited by a team of physicians, including an infectious disease doctor and emergency medical technician, who monitored other organs. Klenk said this is a typical medical approach, as Stevens-Johnson Syndrome is not just a skin disorder, but one that affects other bodily systems due to the open sores on the skin.
“I was nervous because there were eight doctors coming in at one time. I was irritated by all of the people around me. I just wanted them to stop touching me,” said Lauren.
On Aug. 6, after 11 days in the hospital, Lauren was released. She continues to recover from her ordeal. She also must regularly visit a dermatologist, optometrist, obstetrician and gynecologist.
Klenk said this is due to other parts of the body that have a mucosal lining, or soft tissue. Areas such as the inside of the mouth, nose and genitals have this lining – areas that can be affected by Stevens-Johnson Syndrome.
“It can cause problems with eating, your vision and urinating,” added Klenk.
At Recorder press time, Lauren had lost some of her fingernails, toenails and has dark marks on her face and body. Over time, she could also experience hair loss.
“Once the blisters stop forming, it takes about two to three weeks for new skin to grow. People often have blisters in their eyes and can have trouble with scarring that can be a lifelong issue,” said Klenk.
Obeime said for Lauren, the inflammation is gone and she’s under control, but she has a lot of post-inflammatory changes that are going to take several years to clear.
A family bands together
The Murray clan, are an all-star team in every way. The startling news that their eldest daughter Lauren had developed a case of the very rare Stevens-Johnson Syndrome dealt them a serious blow.
“There was a lot of denial,” said Eugene. “As a dad you never want to see your baby girl not being able to do anything. Alicia and I weren’t sleeping. We were trying to make sure we were aware of what the doctors were saying. We felt helpless.”
“I thought I would never be able to step back on the court again, so I was kind of scared,” said Lauren, a passionate volleyball player.
Some people do not recover from the illness. For example, NBA player Manute Bol developed symptoms of the disorder while doing charity work in his native Sudan and died from complications that led to kidney failure.
When asked if she was afraid she might die, Lauren said she put such thoughts out of her head.
“I just didn’t want to think about it. I was crying a lot in the hospital because I really wanted to go home to my friends and family and relax,” said Lauren.
“I think the first night in ICU was the one moment I had. She had a rough time,” Alicia said referring to her middle daughter Sidney.
“The thought of Lauren being in the hospital was very rare. I was looking in her bedroom like, ‘Where is Lauren?” said Sidney.
In typical little sister fashion, Sidney downplayed her level of concern. “Tell the truth. You were worried weren’t you?” said Alicia. “A little bit,” Sidney said coyly.
“Usually they aren’t going to sit in the same room for too long,” Eugene said laughing. “But Sidney came and stayed the entire day, with nothing to do from to 7 a.m. to 9 p.m. She did not want to leave.”
Lauren’s road to recovery was at first a difficult one. In addition to not being able to eat due to her injuries, she was unable to speak. Despite the difficult moments, a silver lining in the cloud came in the form of a mobile app Lauren used to communicate.
“I used it to say, ‘Daddy keeps snoring get him out of the room,” exclaimed Lauren. “I forgot about that app,” Alicia said laughing. “I could hear it in her voice, the attitude and everything,” she said. “Hey, I was tired,” said Eugene.
The Murray family has begun to return to normalcy. Somehow, despite weekly doctor’s appointments, sports, and extracurricular activities, they find the time to enjoy one of their annual family traditions.
“We’re probably the only family in the state that has a chitterling fest,” said Eugene who caused the entire room to erupt in laughter. “Seriously, we have deep fried and stir fried chitterlings and also a chitterling quiche,” he said. “I don’t eat them,” said Lauren. Alicia added that she prepares a big pot of gumbo for guests to enjoy. “It’s a really nice time,” she said. “There’s never a dull moment. I guess that’s why people like us.”
‘The village’ rallies
Upon learning of Lauren’s diagnosis, the Murray family’s concerned network of friends, family, teammates, and even strangers reacted immediately with prayers, gifts, and support.
“It took me to another level, spiritually,” said Alicia. Eugene described the outpouring of love and support as an overwhelmingly humbling experience.
Alicia recalls one hospital memory in particular.
“His (Eugene) frat brothers were on the way, her teammates were showing up and others all at the same time. I was worried because I wasn’t sure if they were all coming up to see Lauren at once,” commented Alicia. She explained she then discovered everyone had met in the hospital lobby to pray. “When I went downstairs, it was like a welcoming committee and it brought me to tears.”
The Murrays also experienced support on social media. News of Lauren’s condition spread like wild fire on Facebook. Family, friends and community members passed on the message to pray for Lauren, even to those who did not know her or the family. Members of their current church, Solid Word Bible Church and those from their past church, Progressive Baptist Church stayed in close contact.
“It showed us how to appreciate family and friends,” said Eugene. “So many people were bringing food, gift cards and prayed for us and they didn’t have to. It makes us remember that we have to continue to be the true people we are. We’re well liked and we do whatever we can for others and it felt good to receive that back.”
One of Lauren’s visitors was her principal, Daphne Robinson. “I wanted to see how she was doing,” said Robinson. “If any student was in the hospital and their parents were willing, I would go visit them. I just had to lay eyes on her myself to make sure she was OK.”
During Robinson’s visit, Lauren’s condition improved, and she sat up and talked. Robinson ensured that an email was sent to all of the teachers to let them know what was happening, and to advise them Lauren may not be returning for the fall semester. Teachers were also aware that Homebound education, a process where teachers are sent to the student’s residence, could become necessary.
“Given her conditions, Lauren was already in school mode, she kept saying ‘I want my books, I want to meet my teachers.’ With Stevens-Johnson Syndrome and the physical aspect, it was a concern of mine as it was hers, so I decided to have an assembly,” said Robinson.
At that assembly, Robinson allowed the students to imagine a time where they could not practice their trade, whether it is art, music or sports and how they would feel if that happened to them. Students learned how serious the diagnosis was, and with permission from the Murray family, the name of their affected classmate was eventually disclosed.
“I explained the sense of community to the students and that Lauren may or may not be in school all of the time. The kids are really responsive,” noted Robinson. “I figure education is better than not knowing at all.”
Lauren said she hasn’t gotten many weird looks or questions from peers upon her return to school. The day she walked through her school’s doors, Eugene remembers it like a church service.
“Students and friends were shouting in the hallway and when she walked into the gym people started crying,” he said. “At that point you realize how much you are loved by friends, peers and teachers. That was my concern, the physical aspect,” said Eugene, as he brought his hands up to his face to illustrate the temporary distortion of his daughter’s face. “She didn’t look the same. Her teammates were very supportive so that comforting helped her get acclimated back into school.”
Lauren was upset she couldn’t participate in her volleyball team’s first scrimmage, but she did play in the school’s first home game. Within two weeks of release, she was back on the court.
“I didn’t know how strong I was until this happened,” said Lauren. “I’m glad I had a lot of support from my friends and family because without that I would be mentally crazy.”
Today, the Murray family say their crisis has taught them lasting life lessons. They cherish time with one another more than ever before, and remain open when judging others’ situations.
“I realized we have to be a lot more intentional with our actions toward one another,” said Alicia.
The Murray family adds that they are more diligent about quickly acting on prayer requests and supporting others in their time of need. “You never know what someone is going through,” said Alicia.
