Dealing with PTSD: how a mother coped after death of teen son, who had rare genetic disease
- Christina Strong developed post-traumatic stress disorder after her son died aged 15 having suffered 10 strokes in five years
- She learned to control it after multiple years of therapy, and now helps other families whose children suffer from under-supported conditions
At a Greek restaurant in Hong Kong’s Central district, Christina Strong pauses mid-conversation to reposition my left arm, which had been extended straight with my hand planted on my thigh. She bends it into a seemingly more relaxed position. “For a moment my heart sank as I thought you had had [a stroke],” Strong, 51, explains. “When you have a stroke, people can’t move their arm.”
Throughout our meeting, Strong objected whenever I straightened my arm, and leaned over to bend it again.
Strong has witnessed such indicators of a stroke too many times in her lifetime, only they were real, not imagined. Her late son, Joshua Hellmann, was 10 years old on Christmas Day in 2002 when he suffered a stroke. A year later, it happened again in Switzerland. Tests showed he had MELAS syndrome (mitochondrial encephalopathy, lactic acidosis and stroke-like episodes), a rare genetic disease that is often fatal and particularly affects the brain, nervous system and muscles.
Early symptoms may be seizures, recurrent headaches, vomiting and involuntary muscle spasms. Another hallmark is stroke-like episodes that tend to recur and progressively afflict the brain.
It has been more than a decade since Strong’s son died, yet it doesn’t take much to trigger memories of that crisis. Sometimes she is alarmed by a late night call from one of her daughters in Los Angeles (she has two: 21-year-old Athena and 19-year-old Catharina), as she expects it to be about a medical emergency.
“If she says, ‘I have headache’ – never say a headache to me,” Strong says. It instantly brings to mind another of Joshua’s stroke symptoms.