The baby girls were born into a lovely family after a hard pregnancy for their mum, who had a massive belly that looked like it was going to be torn apart at any time.
The baby born first is always claimed to be the strongest. The second one was born half an hour after the first one and was indeed smaller in size and weight. She was named Lucy.
At the age of five, she fell terribly ill. It was meningitis and after a hard battle in hospital, she came home with a bunch of medicines and no brain damage. The doctors were impressed at such an excellent outcome. She was very strong, they said.
After a few days, a second battle started at home: Lucy refused to take her medicine. She cried, screamed and said it hurt her to swallow, but she was forced to take it. She needed to be forced, they could not risk her full recovery.
Days later, a visit to another doctor sent Lucy straight back to the emergency department. It was then when her father, my uncle, rang me and asked in distress, ‘Do you know anything about a disease called Stevens-Johnson?’
I quickly tried to recall names of diseases from a book we had in our family library and said, ‘I haven’t heard of it, but I will search for information and ring you back ASAP’. I never asked him why he called me. I am not a doctor and I know nothing about medicine.
I emailed a friend who knew people in the medical field. She sent me some links and as I read, my eyes watered. Soon a river of tears was flowing down my cheeks; still, I had to call back and be the bearer of bad news.
In hospital Lucy was tied to her bed, fully immobilised to prevent hurting herself. As the days passed, medical personnel preferred not to touch her or even look at her. The parents carried out most of the care in those last days. Her eyelids falling apart, her body covered in open blisters, her insides self-destroying.
The Stevens-Johnson syndrome was triggered by one of the medications that saved her from meningitis. The more medicine forced into her, the stronger the self-destroying reaction of the body. Who could have known?
Her coffin was locked so no one could see how she looked like after such a horrible death. My uncle held the key tightly in his hand during the funeral. He wanted everyone to remember his daughter as the sweet, lovely girl she was. Little Lucy, rest in peace.
Burnside Writers Group 