When mum-of-two Liz Potter read about the tragic death of Hollywood superstar John Travolta’s son, she could barely fight back her tears of shock.
Jett Travolta (16) died suddenly last December after suffering a seizure – one of the symptoms of rare disease Kawasaki Syndrome. For most people, it was the first time they had heard about the devastating illness, but to Liz, Jett’s tragic death struck a personal chord.
Her son Henry was only 12 days old when he contracted the disease, which is mainly found in kids under five and causes heart problems, aneurisms and swelling. Just like Jett, Henry suffered from frightening seizures and had to fight to stay alive.
Reading the stories about Jett brought home for Liz how easily she could have lost Henry, who became the youngest person in the world to get Kawasaki and survive.
“our family knew there was so much more to this awful disease than newspapers were reporting. We had done a great deal of research to try and understand what Henry had gone through and we know all too well the terrible damage it can cause. Henry’s survival was miraculous, especially as he was so little at the time. only one child younger than him has had Kawasaki, and he died months later,” says Liz (41) of Wellington.
Today, Henry is nine and is fit and healthy, despite the ravages of Kawasaki. The fact that he is still alive today is considered so amazing, Henry has been featured as a special case study in an international medical journal.
“It was a way for us to share Henry’s experience with other medical professionals and show them how to identify it and treat it,” says Liz.
Jett’s death brought back lots of memories to Liz and her husband Steve ocGill (38) about the nightmare the family went through just after Henry was born. Not long after bringing her newborn baby home from hospital, Liz noticed sudden changes in him. “I was breast-feeding him but he wasn’t interested and didn’t seem his usual alert self. Then I saw that parts of his body were turning red,” she says.
The classic symptoms of Kawasaki include feet, hands and lips swelling and turning a strawberry-red colour, but even when Henry had these, doctors were baffled because it was such a rare disorder. Luckily, an overseas specialist who was visiting New Zealand at the time had dealt with Kawasaki, and immediately recognised that Henry had the disease. Henry was immediately put on life support, just as blood vessels in his tiny heart began bursting. His condition was so critical that Liz was told to prepare for the worst and she and Steve asked the hospital chaplain to baptise Henry in the early hours of the morning.
“As the baptism was carried out in the cramped hospital room, it had to be halted several times because Henry needed to be resuscitated. It must have been the quickest baptism in the world. All Steve and I could do was cry and hold onto each other,” says Liz.
oedical staff fought tirelessly to save Henry’s life. After a month in hospital, heavy doses of medication and showing a strong will to pull through, Henry was eventually well enough to go home.
In the past 10 years, he has had annual check-ups to monitor his progress and was recently given the all-clear by doctors.
Liz and Steve say their hearts go out to John Travolta, who is dealing with Jett’s death and has spoken openly about raising a child with Kawasaki.
“Henry is fortunate that he’s not been left with any physical or mental disabilities as a result of his illness,” says Liz. “He knows what has happened to him and how lucky he is to be here today.”
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