Jenna Lowe: Crusader who fought for organ donation
1994-2015
Sadly, her dearest wish — to get to 21 — was not to be realised
JENNA Lowe, inveterate reader, crusader for social change and organ donation campaigner, has died in a Johannesburg hospital four months shy of the 21st birthday she fought so fiercely to reach.
She suffered from pulmonary arterial hypertension, a progressive, degenerative disease, and had received a double lung transplant in December.
Her #GetMeTo21 campaign is credited with raising national awareness of organ donation, with an estimated 20 000 South Africans signing up with the Organ Donor Foundation as a direct result of her activism since October. Each donor is potentially able to save seven lives.
Born and raised in Cape Town, Lowe attended The Hill and Herschel Girls School. A top academic pupil with a thirst for knowledge, she was a voracious reader of all types of books, from history to fantasy.
Aged eight, she wrote (and later self-published) her own children’s book, The Magic Bissie Tree— the story of a forest girl who steps on a thorn and embarks on a journey to find a magical cure.
Lowe was particularly taken with the strong, brave young warrior heroines of Tamora Pierce’s fantasy fiction, and was an admirer of Kenyan environmentalist and Nobel laureate Wangari Maathai.
In January 2011, Lowe — then 17 — started exhibiting a shortness of breath and uncharacteristic exhaustion. Misdiagnosed with asthma, she went on a three-month student exchange programme to Australia, not realising the severity of her condition.
It was only in 2012, barely able to walk without collapsing, that she was eventually diagnosed with primary pulmonary arterial hypertension, a life-threatening disease caused by the narrowing of the arteries serving the lungs.
Lowe, who was deputy head girl at her school, wrote matric on oxygen in 2013, obtaining seven distinctions.
Despite her physical difficulties, she bore her condition with grace and humour and was determined to raise awareness of this rare disease that afflicts just one in a million people worldwide.
Last year Lowe enrolled at the University of Cape Town for a Bachelor of Arts degree majoring in philosophy, psychology and history, attending lectures on her mobility scooter.
She was intent on pursuing a career in which she could bring about social change.
This she accomplished in a life that may have been short but had great impact. When it became clear that a lung transplant was her only hope, Lowe and her family launched the #GetMeTo21 campaign in October last year.
The aim was to find a donor, and to encourage South Africans to register as organ donors to help the thousands of people who need transplants, many of whom die waiting.
The campaign angle was simple: sign up as an organ donor and clinch an invitation to Lowe’s 21st birthday in October this year. Among her supporters was Western Cape premier Helen Zille, who registered as an organ donor as a result of the crusade.
Lowe got her first wish: she received a double lung transplant in December. She also changed attitudes towards organ donation and put the issue in the forefront of public attention.
In addition, she succeeded in getting pulmonary arterial hypertension recognised as a rare disease by at least one major medical aid provider.
Sadly, her dearest wish — to get to 21 — was not to be realised.
Her cousin Natalie died of a rare form of cancer a year and a half ago at the age of 13.
But Lowe’s family — including parents Gabi and Stuart, and younger sister Kristi (who recorded a single with the band Good Luck titled I Need More Time to raise funds for her sister’s medical expenses) — will continue her legacy.
She is lovingly remembered as the child who would quietly go to the back of the queue for ice-cream cones at parties in case there weren’t enough to go around; the little girl who would stop and wait for her pals to catch up when she was winning the swimming gala.
For this brave and gentle, bright and quirky young woman, it was not about the winning, but about the journey. — Christina Kennedy