In October 2014, twenty-year-old Jenna Lowe invited the entire nation to her 21st birthday, she captured the hearts and minds of the entire nation and changed the way we see organ donation in South Africa.
Cape Town, South Africa – Jenna Lowe was a bright, beautiful and courageous young girl who lived in Cape Town, South Africa. She had a gentle, yet strong, compassionate and engaging nature and lived a happy, healthy life until she was diagnosed with a rare, life-threatening illness at the age of seventeen.
Jenna was blessed with great intellect and interest in the world, from a very young age her wish was to influence social change.
“She devoured books, and at the age of eight she wrote and published her own magical children’s story called The Magic Bissie Tree. It tells the story of a young forest girl who steps on a magic thorn and falls gravely ill. The story follows the girl’s journey through many adventures and battles to a far off land. She is guided by a magical doctor to find The Magic Bissie Tree, her cure.”
It’s about the generous people who help her on her way, the challenges she faces and the bravery she shows in the face of her rare condition. Little did the then eight-year-old Jenna realise that in some symbolic way, she was predicting and writing her own story.
Jenna’s avid thirst for knowledge ensured her a successful school career. She won many academic awards and accolades and had a particular passion for languages, history, politics and philosophy. In 2011, whilst in Grade 10, she represented her school at Arch Bishop Desmond Tutu’s Youth Peace Summit. She also played the lead role in her school’s house play, was enjoying great long term friendships and had been selected to go to Sydney, Australia, for an exchange programme.
Her life appeared to be perfect.
It was at around this time that Jenna started to become noticeably breathless. She breathed heavily, tired easily, needed more and more sleep and found exercise increasingly difficult. Doctors conducted many medical tests, including an ECG, extensive blood tests, chest x-rays, echo-cardiograms, lung function tests and more.
They could find anything to explain her symptoms. But knew that something was very wrong.
“Halfway through 2011 Jenna was misdiagnosed with Asthma. Relieved that we had ‘found the problem’, Jen was put onto asthma treatment and went ahead with the exchange to Sydney for three months … she came home in far worse condition than she left.”
In January 2012, now aged seventeen, Jenna was hospitalised for the first time. She could no longer walk even a few meters without collapsing with breathlessness. So began the slow and difficult process of finding the correct diagnosis.
“Eventually it was a nuclear VQ scan and catheterised angiogram that confirmed our beautiful young daughter had an extremely rare lung disease called Pulmonary Arterial Hypertension (PH). This little-known, degenerative and life-threatening condition changed Jenna’s life – all of our lives – forever.”
By early 2014 Jen was urgently listed for a bi-lateral (double) lung transplant in early 2014. Yet again the family threw themselves into doing research.
It was with horror that they realised South Africa has one of the lowest organ donation rates in the world: only 0.3% of the population are organ donors. And yet there are at least 4,300 South Africans desperately awaiting a transplant on any given day. Who would have thought that South Africa, the location of the first-ever heart transplant, was in a dire situation with regards to organ donors?
Jenna took up the cause. She became passionate about raising awareness to increase the number of organ donors registered in SA. They educated themselves once again and put together a Plea for Action and presented it to the Portfolio of Health Committee in Parliament. The family also rallied the media to help raise awareness and, with the help of Lowe Cape Town, Jenna’s award-winning, internationally acclaimed, Getmeto21 campaign was born.
In its simplest form, it was an invitation to the entire nation to attend her 21st birthday party. All you had to do to be there was sign up to be an organ donor.
By now Jen was pretty much bed-ridden; their telephones never left their side in case they got “the call”. Those were difficult times. The family knew she was getting worse by the day and the chances of finding the perfect organ match were slim. And yet, there was always hope.
At 9.10am on December 10th, 2014, the call came. A match had been found.
“We had four hours to move our lives and our precious girl to Johannesburg, complete with all her complex equipment, O2 and medication. The evacuation plan kicked in to action. For months we had been ready and waiting a detailed document called Operation O2, which listed everything that needed to happen, how it was to happen and in what order, so that we could get her there in time.”
Four hours later (not without some challenges along the way) a helicopter carrying Jen landed at the hospital. With her mom, dad, sister, Nurse Lizzie and boyfriend at her side, Jen said her goodbyes and was and wheeled into surgery at 6 pm.
The surgery was eight hours long and very intense. The surgeons said it was one of the most difficult surgeries they’d ever done. The Johannesburg skies punctuated the night dramatically with thunder and lightning as we waited during those eight long hours. Waiting had now taken on a whole new meaning.
Jen was wheeled out at 2 am. She had survived the surgery! Hope flooded in, and so began six incredibly difficult and indescribable months in ICU.
Jenna spent six months in hospital for post-transplant care. Most of that time was in ICU. The lungs were an excellent match but her tiny body was wracked by gastro paresis, kidney failure, appendicitis and pancreatitis, amongst many other things that had gone wrong.
Jen was dealt with far more complex health challenges than most post-transplant patients and she bore them with unique gratitude, courage, grace and dignity right up until the end.
“We had moved our lives to Johannesburg and we nursed her lovingly and fiercely 16 hours a day. It was an unimaginably traumatic time, with much pain and suffering.”
“Despite our continuous hope that she would recover, our beautiful Jenna passed away on the 8th of June, 2015. She was still in ICU.”
The entire nation mourned the day she passed away, on the 8th of June 2015, just four months shy of her 21st birthday that she so desperately wanted to make.
Her dying wish was to encourage more people to become organ donors in SA. She also wanted to help other PH patients find treatment earlier and to start a lung transplant unit for state patients.
Today, we commemorate and remember her extraordinary life as a young leader, role model, educator, and champion. Along with the Jenna Lowe Trust, we can all continue her legacy in simple ways and continue to drive her ultimate passion, to change the world for the better.
“Jenna planned a 21st celebration like no other. Her intention was to hold a spectacular event to celebrate this milestone with every person that signed up as an organ donor through her GetMeTo21 campaign.”
This campaign was not only about her personal need for lungs, but it was also about the other 4400 patients in South Africa awaiting organs for life-saving transplants; the vast majority of whom are young people, also desperately wanting to get to their next birthday. Sadly, Jenna passed away on the 8 June 2015, four months shy of her 21st.
In life, Jenna exuded inspirational bravery that touched people and has undeniably created massive social impact in South Africa by increasing organ donor registration by 238%, through her campaigning alone.
Her efforts to raise awareness for the rare and under-diagnosed lung disease Pulmonary Arterial Hypertension (PAH) from which she suffered has also paid dividends as the first specialist PAH unit at Groote Schuur Hospital & UCT Private Academic Hospital in Cape Town is now operational.
“To acknowledge and celebrate Jenna’s beautiful life, the Jenna Lowe Trust has a newly designed website that continues the important conversation and work that she started.”
Designed to make news and features easier to find for families and patients in need of resources and information on PAH and organ donation, the improved user experience enables visitors to read, contribute and share information.
In addition to the new website, and in honour of her birthday, The Jenna Lowe Trust has partnered with RELATE Bracelets to create a red beaded bracelet to honour, acknowledge and celebrate Jenna’s beautiful life. From today, the Jenna Lowe RELATE Bracelets will be available in boxes of ten online, selling for the launch price of R35.00 a bracelet.
Proceeds of the sales go towards the Jenna Lowe Trust, which is mandated and committed to continue raising awareness for Pulmonary Hypertension, Organ Transplantation and Rare Diseases in South Africa.
“I can make a difference, and a difference can make me”, Jenna Lowe, aged 12 years old.