SJS Kids Stories

Want to share your story?
With your parents help write one to two paragraphs of your SJS experience

then email it to sjsupport@gmail.com along with a current picture of you.

My name is Jeri-Ann, I had SJS in the summer of 2011 I was in the ICU burn unit for 3 weeks and the last week I got sent to a regular room. I now suffer from PTSD, dry eye syndrome, photophobia, a comprised immune system, and other complications. I see multiple specialists and wear PROSE devices to help me see. I am thankful for the amount of love and support I had through my journey, some people don't even have this. Although I have lost so many friends because of my limitations and this horrific disease, I have gained so many more. I am so blessed to have been able to meet so many wonderful survivors and their families as well; it helps to know that I am not alone.

This is Shane Angelo, he had SJS/TEN in August of 2003 when he was 21 months old from Phenobarbital & Phenytoin. He spent 2 1/2 weeks in the ICU and 9 weeks in the Burn Unit at the Hospital for Sick Children in Canada. He is a happy boy and doing great at school. He is our Hero, our Angel. We are very thankful, to have him in our lives.

Seth had SJS July of 2008 and spent 3 weeks in the hospital. Seth is an amazing kid that has never complained through this whole ordeal. He continues to enjoy most things he did before SJS; hunting, snow mobliling, and all lake sports.

Hi, my name is Stephanie Zundel and I'm 13 years old living in New Jersey. I got SJS/TENS two weeks before my third birthday. I got SJS from Children's Motrin. I lost 97 percent of my skin, all my hair, my nails, my voice, and my eyesight. I was in the hospital in the burn unit for two months. The doctors thought I was going to die because I had extreme third degree burns all over my skin and I was wrapped in gauze with many different tubes in me. I couldn't move or talk. It was a devastating time for my family, but a miracle happened and God helped me gain my strength and I survived. I have many scars and I'm still blind. My nails didn't grow back right because they look like I bite them, but I'm thankful that I survived.

Lacey Heskett had SJS when she was 3 years old and spent her 4th birthday in the hospital. SJS effected Lacey in many ways. She was left with both eye and lung damage.

Hi! My name is Caleb McCourry and I am 10 years old from Norman Oklahoma. I had SJS in October of 2007. I got ill with what the doctor thought was Mycoplasma Pneumonia and was put on Zithromax. I started to show signs of SJS after 5 days but was misdiagnosed by my doctor fortunately my mom researched my symptoms and came up with SJS. My parents took me to The University of Oklahoma Children's Hospital where they said it was indeed SJS. I was in the hospital for 17 days. I am well now and have no side effects thank goodness. I like football, playing with my friends and riding my bike.

Hello, my name is Oakley, in dec 2013 when I was 7 I had an allergic reaction to my epilepsy medicine. I had sjs/ tens and lost 100% of my skin all my finger and toenails and all my hair. I also lost part of my big toe. I spent 5 weeks on a ventilator in intensive care. Then a further 3 weeks in intensive care before I was moved to the rehabilitation unit where I learned to walk and eat again. I was determined to go home so I worked hard to get there. After 3 months I finally got to go home. I missed Christmas and several family celebrations but I am a survivor I am alive and my scars tell the story of the fight I had for my life. A battle I won!

This is Mahayla Kanaugh. She is 5 years old and had SJS when she was 15 months old. She got it from taking Phenobarbital. She was in the hospital for about a week and as her mother I thought it was the worst thing ever but I soon found out, through website's like this one, that she could have been a lot worse. She is definitely a miracle from God and I am so thankful that she is doing well with out any major lasting effects from SJS. She is now in pre-school and doing wonderfully.

This is Brendon Brown. He had TENS in March of 2007, a few weeks after turning 3 years old. He is 4 years old now and overall, is doing well

This is Matthew at age 5. This photo of Matthew was taken 1 week before he contracted SJS from either Motrin and/or Zithromax. The day after this photo he became ill with an ear infection and high fever. 4 days after he started the Zithromax he came down with symptoms of SJS. Thankfully the wonderful doctors at the Hunterdon Medical Center in Flemington NJ were familiar with SJS sent him immediately to the Children's Hospital at St. Peters University Hospital in New Brunswick, NJ. Matthew is doing wonderfully now... Thank you for this wonderful website. Matthew is very happy to know that there are other children out there that he can relate too with his experience

Kolby lives in Pennsylvania and has experienced SJS three times at the age of 7, 8 and 10 years. He is currently a very active 11 year old that enjoys all sports and hunting with his father. We are very blessed by God to have Kolby in our lives. He is a true Angel on Earth!

Derek had SJS in February 2005 as a result of a combination of ibuprofen and mycoplasma pneumoniae. He spent one week in Children's Hospital of Pittsburgh. Derek enjoys playing ice hockey, fly fishing, golfing, and hunting. He has a promising future ahead of him as he begins making application to colleges in pursuit of obtaining his goal of working in a conservation/fisheries management career

This is a picture of Miranda Warr. Miranda had SJS last August at the age of 4. She had a reaction to antibiotics. We are grateful she has had no long term effects

Jeanette had SJS when she was 6 years old in 1991. She had gone to the doctors for strep throat, a couple of days later she had an allergic reaction to the Amoxicillin. Her doctor misdiagnosed her with measles. Jeannette was in ICU burn unit for almost two weeks in a drug induced coma with 82% of her body covered in blisters. Fortunately, she doesn’t remember most of her hospital stay, but since then she has had numerous procedures to help improve her vision in her right eye. Today she has graduated high school, received a Girl Scout Gold award, became a Certified nurse's assistant, and is married and is a mom to 2 beautiful children. Jeanette wants everyone to know “I refuse to let anyone tell me I can't accomplish what I want to because of SJS taking my sight, and I hope that anyone reading this knows you can accomplish anything you set your mind to. Never let SJS bring you down!”

Lily had SJS in Sept 2005. She is doing fairly well. She has had 4 operations on her eyes, continues to have GI problems and her poor skin is fragile and dry. She is so funny and quick to laugh and brings joy to all she meets!

Austin had SJS in November, 2007 and February, 2009. The first time the doctors did not diagnosis him with SJS - but now the 2nd time, knowing what SJS is, he definitely had it in '07 too. This second time was much worse. Five months later we would have never thought things would be back to "normal" after 2 weeks in the hospital and a long recovery. Things will never be quite "normal" again for Austin or any SJS victim or family as we will always wonder if he'll ever get it again. The doctors "think" it was from a virus....although he had been taking ibuprofen for a week before his symptoms this time (don't remember last time) for a swollen knee that was a sports injury. Needless to say - no ibuprofen or sulfa based drugs for him ever again! He is another kid who never complained at all through his whole ordeal

Six year old Ian from Mexico spent 2 months in the intensive care unit in Galveston with SJS. Pictured here with his little brother 4 year old Andre enjoying a good time off the cost of Cancun

Miranda is a 12 year old who contracted SJS in November of 2004. She was diagnosed with mycoplasma pneumonia on 11/9/04 and prescribed Children's Motrin and Zithromax. On 11/14/04, she was admitted to Children's Hospital of Pittsburgh for Stevens-Johnson Syndrome with ocular and oral involvement where she received a 5-day treatment of IVIG infusions. Since her discharge she has undergone surgery on her tear ducts to remove scar tissue build up. Though the surgery was not 100% effective, Miranda lives the normal life of a pre-teen and does not let it stop her.

Hello my name is Yaasmeen Castanada, in Nov 2014 the fight for my life began I was 19 years old when I had an allergic reaction to Bactrim. On thanksgiving day I had cold symptoms and a sore throat so I took the antibiotic called bactrim as the night went on my eyes and throat began to burn, my eyes and lips turned red and I was rushed to the hospital. I was diagnosed with SJS/TENS and lost over 90% of my skin and lost all my hair. I spent 3 weeks on a ventilator under sedation and on painkillers in intensive care. After I was removed from the ventilator I started showing progress. I learned how to eat and walk again. I was planning on going home in a week and I was determined to go home. Until one night I started having a nasty dry cough and it became hard for me to breathe. The next morning I was taken to get a tracheostomy surgery because my air way began to close. I spent another 4 weeks in the hospital. After 2 months I finally went home. I missed my daughter's first Christmas and New Years but I am alive and happy to be back with my family. I am a survivor.

Kai Kehm had SJS/TEN when he was 3 years old from taking Bactrim for an MRSA ear infection. Kai lost 80% of his skin but fortunately only spent 1 month at Texas Children's before going home. Kai received special lenses which reversed the corneal damage. He has no lung disease and no scarring except for a small amount under his left eyelid. He doesn't appear to have any lasting results from SJS/TENs and we are so very thankful.

My name is Caylynn, I had SJS/TENS when I was 10 years old. I have had it 8 times since then and now I'm turning 16. It has effected me in many ways. For instance I was a lot less shy when I was 9 and 10 until I got it SJS. Then I was more shy and less confident after words. Everybody started noticing my scars and I was worried. I thought my life would never be the same. Really now that I look at it, it's not. I have dry eyes and double vision. But now I'm 15 and working. I am shouting out to whoever has had sjs cause I feel for them. I know what they went threw and are going threw.

Hello,
My name is Valerie and I am 9 years old, and in the 4th grade. I live in Michigan. I had SJS in January of 2008 when I was 8 years old. Valerie

Jeremy was seven years old in 2004 when he got SJS after taking Bactrim for a staph infection. He spent three weeks in the Children’s Hospital of Austin. He has some tissue damage in his eyes, and learned how to put in his own contact lenses when he was only eight! This photo was taken the year after SJS when Jeremy served as a Miracle Child for the Children’s Miracle Network to help raise funds for children’s hospitals. Today Jeremy is in middle school and doing great. He enjoys tennis and computer games.

Tyrelle Turner had SJS at 10, to Bactrim. Tyrelle was in Little Rock, Arkansas’s Childrens Hospital. He was burned over 70% of his body. Despite having some scarring and side effects he is excelling in school today and is in all honors classes making all A's. He is also doing phenomenal on the athletic level. He was MVP and captain of his football team. His mom is so proud of him.