Our Story - Page 2


The Hospital decided to keep Joe in for observation. Joe was treated for a non-descript viral infection of the respiratory tract. A couple of weeks passed in hospital and his bloods and chest were now fine, but he still had a fever. As Joe relied completely on us, We noticed things that most people would dismiss.

Early signs of SJS Joe had developed red pin prick marks on his legs, doctors decided to start him on Meripenem antibiotic to "kill all bugs"! They also decided to increase his Topiramate as he was on a small dose. Two days later, the hospital thought he had chicken pox, as a blister had developed on his neck and his forehead. This made sense as he had been miserable for 3 weeks, the right incubation period for Chickenpox. As Joe had special needs, they moved him into isolation.

As the day progressed Joe deteriorated fast, his little mouth was black with ulcers, his hands, feet, neck and face covered in blisters. Around midnight a doctor saw Joe, she thought he may have Hand, Foot and Mouth Disease and Chickenpox, as it was the weekend, however they would wait until Monday to aspirate a blister to confirm the infection.

The following morning Joe was very ill. I couldn’t get a doctor to see him as they were doing their rounds. It was obvious something very serious was happening. My husband and daughter arrived and were horrified. Joe's heart rate then became very erratic.

At this point everything became a blur Joe was taken to HDU, put on morphine and struggled to breathe.

We were told Joe could die, amazingly, he carried on. Weeks of pain, creaming his little burnt body and praying followed. Then in July he seemed to be improving. His skin started to heal and we started to wean him off morphine. Megan-Lily celebrated her 5th birthday at his side, things seemed good. We then were told he had pneumonia but antibiotics had been started so we were not to worry.

SJS progressingSJS Progressing The next day Joe had a trickle of blood from his mouth, his finger and toe nails looked like they had dirt under them. We were told that Joe had Gram negative Sepsis, total organ failure and internal bleeding. We were all told to say goodbye, he really couldn’t pull through as nothing else could go wrong.


Joe received fantastic medical care at The Royal Cornwall Hospital and The Bristol Children's Hospital.