Zachary Rena is the boy who caught the extremely rare brain-eating amoeba infection. He lost his fight with the disease and was buried yesterday in a moss filled graveyard where insects hummed to the sad news of his passing. Only 12 years old, Zach was an avid baseball player but on August 3rd he caught an unusual parasitic infection from a tiny amoeba found in the water filled channels near his Fort Myers, Florida home. Few patients have survived the disease, caused by the amoeba, Naegleri fowleri, but even fewer have contracted it, so his death was a tragedy and a shock to his family, his school and his community.
Unbelievably, a 12 year old girl from Little Rock, Arkansas was struck by the same brain-eating amoeba a few days ago. Hospitalized; Kali Hardig pulled through with successful medication and is now recovering while giving interviews and photo ops. Given that only 32 cases have been recorded in the US over the last ten years, it is most surprising that these two victims were the same age but the outcome was remarkably different. The tragedy is that difficulties in recognition of such obscure diseases delays the use of life saving medications.
This disease, primary amoebic meningoencephalitis, is difficult to contract and less than 50 cases have been reported since the beginning of record keeping. First documented in Australia in 1965, the parasite is located in warm waters of countries as disparate as England, Pakistan and the US. The only way to avoid the disease is by wearing nose clips that prevent the parasite from entering deeply into the sinuses. Given the rarity of the illness, nose clips are not ordinarily considered by swimmers. Many are exposed to the parasite but few inhale the infected water deeply enough for the parasite to infect the brain. Zachary should not have perished but the brain-eating amoeba was so destructive that his brain could not recover.
From childhood we are fascinated to hear of obscure, bizarre and outrageous diseases. This infection is one of those and is particularly aggressive but the chance of catching rare diseases is so small as to be irrelevant. Obscure parasites, unusual chromosomal imbalance, bizarre infections can lead to death in only a very few cases.
Perhaps Werewolf disease fits the obscure disease category in the most dramatic way and has garnered more publicity that is appropriate. Affecting less than 50 people since records were kept, there are different strains that exist. The technical name is hypertrichosis. Sufferers experience an overgrowth of hair and since the Middle Ages, occasional cases have been reported. In 2011, the Guinness Book of World Records named a 12 year old Thai girl the world’s hairiest girl. Supatra Sasuphan has a severe case of this disease but she is a successful student and should fulfill her dream of being a doctor. “It’s the way I am. I don’t even think about it” she said.
Many people are fearful of catching obscure diseases but Zachary Rena was not one of them. His funeral celebrated his life which was his legacy and meaning, far more important than his sudden, unusual death. Zachary Rena, the boy with brain eating amoeba, gave up the fight last week.
By Vicky Judah