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Jenna Lowe was an extraordinary young girl who made a massive impact on the landscape of a rare and cruel lung disease called Pulmonary Hypertension. She got South Africa to wake up and start talking about organ donation with her effective, award-winning campaign Get Me To 21. Her impact became global and her legacy continues to grow.

Jenna Lowe

Jenna Lowe was an extraordinary young girl who made a massive impact on the landscape of a rare and cruel lung disease called Pulmonary Hypertension. She got South Africa to wake up and start talking about organ donation with her effective, award-winning campaign Get Me To 21. Her impact became global and her legacy continues to grow.

Jenna's Story

Jenna Lowe Article

Jenna Lowe was a bright, courageous young girl from 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 17.

She was blessed with great intellect and interest in the world. From a young age, her wish was to influence social change. She devoured books and she wrote and published her own magical children’s story called The Magic Bissie Tree when she was eight. 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 eight-year-old Jenna realise that in some symbolic way, she was predicting and writing her own story.

Jenna LoweJenna Lowe School Photo

Jenna’s 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, while in Grade 10, she represented her school at Archbishop 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 for an exchange programme to Sydney, Australia.

Around this time, Jenna started to become noticeably breathless. She breathed heavily, tired easily, needed more sleep and found exercise increasingly difficult. She underwent a battery of medical tests, including an ECG, extensive blood tests, chest X-rays, echocardiograms, lung function tests and more. Nothing could explain her symptoms, but we knew that something was very wrong. Halfway through 2011, Jenna was misdiagnosed with asthma. Relieved that we had ‘found the problem’, Jen was put on asthma treatment and went ahead with the exchange to Sydney for three months. She came home in far worse condition than she left.

The following January, Jenna was hospitalised for the first time at 17. She could no longer walk even a few metres without collapsing with breathlessness. So began the slow and difficult process of finding the correct diagnosis. Eventually, a nuclear VQ scan and catheterised angiogram confirmed our young daughter had an extremely rare lung disease called pulmonary arterial hypertension (PAH). This little-known, degenerative and life-threatening condition changed Jenna’s life – all our lives – forever.

SEARCHING FOR TREATMENT

We were committed to finding the right medical care and educated ourselves about PH so we could stay abreast of the latest medical knowledge and global treatments to improve Jenna’s quality of life and buy her more time. From the beginning, it was clear – as with any rare disease – the family’s involvement in her journey was going to be vital. Social media and the internet helped us to find, connect and collaborate with the best medical advice and international PH centres of excellence, specifically UC Denver, Colorado Hospital in the US, and St Vincent’s in Sydney. We left no stone unturned to find, fund and import treatments that would help Jenna and other PH patients in South Africa.

Despite this, Jenna became increasingly more ill. There was no way to predict her energy levels. She was robbed of oxygen and slowly lost her ability to conduct a normal life. Her regime of medicines was vast but her attitude was astonishing. She refused to become a victim or give up on her goals and exuded dignity, courage and grace in the face of adversity.

WANT TO KNOW MORE ABOUT PH?

Pulmonary Hypertension is a rare, degenerative lung disease for which there is not yet a cure.It is complex, characterised mainly by breathlessness, low oxygen saturation, fainting, excessive fatigue and chest pain – and will impact every aspect of your daily life. Early diagnosis and access to treatment are essential to ensure quality of life for patients.

Other Useful Links:

“Live with an open heart, because if you close yourself off to protect yourself from the hurt, you also stop joy from getting in.’ – Jenna Lowe; aged 20
Jenna Lowe Living life to the full
“Live with an open heart, because if you close yourself off to protect yourself from the hurt, you also stop joy from getting in.’ – Jenna Lowe; aged 20
LIVING LIFE TO THE FULL

By mid-2012, Jenna was using a mobility scooter to move around as she could no longer walk without putting strain on her heart. Six months later, she was on supplemental oxygen 24 hours a day. Nevertheless, she participated in and won the National Public Speaking Championship for Persuasive Speech in Grade 11 and was deputy head girl in Grade 12. Each day she would sleep a little longer. She had to grab the moments when she felt strong enough to attend classes, debating society and public speaking club, or to get up and have a meal.

At the end of 2013, Jenna managed to write her final matric exams in a private room with an invigilator. She survived on six litres of oxygen a minute. Incredibly, she graduated with seven distinctions and 11 academic prizes from her school. She was also invited to the Premier’s residence to receive an Academic Excellence Award for being one of the top 30 students in the Western Cape.

THE INVITATION TO JEN'S 21st

In October 2014, despite being bedridden with PH, Jenna Lowe invited the entire nation to her 21st birthday. The results were astounding.

Her invitation went viral, it was all over social media, in every newspaper, on radio and on television. This was the single most successful call to action for organ donors in South Africa, with more than 20 000 new organ donors signing up in just three months – a 287% increase in donor registrations. Over R14 million was raised in media-generating awareness for the dire situation in SA.

Invitation to Jens 21st
WE FOUND A MATCH

Jenna was getting worse by the day and on 10 December 2014, a match was found. Jenna had four hours to get to Johannesburg and was emergency airlifted thanks to some remarkable people, including the Ackerman family. She received a double lung transplant that evening during eight hours of intensive surgery.

Together we rallied the Medical Control Council of SA and international pharmaceutical companies to bring in the drugs Jenna needed. We held numerous fundraisers to pay for them and ran a highly successful media awareness campaign for pulmonary hypertension so that other patients could get earlier diagnosis and, therefore, better care.

Jenna and her boyfriend

DONATE NOW

The Jenna Lowe Trust supports a clinic for PH Patients at Grooteschuur as well as many advocacy and patient empowerment programmes. We need your help to continue supporting patients in need.

Find out more here.

MORE EXPERTISE NEEDED

By December 2013, it was evident Jenna was rapidly deteriorating. With the help of Discovery Health, Professor Wilcox at UCT Academic Hospital, and our fundraising efforts, we flew Professor David Badesch, director of the Pulmonary Hypertension Programme at University of Colorado Hospital in the US, and his nurse practitioner to South Africa. Their intention was to see Jenna and oversee the introduction of an intravenous drug called Flolan and hold symposiums in Cape Town and Johannesburg to share their knowledge of PH and treatment options with local doctors.

24 - HOUR INRAVENOUS MEDICATION

Flolan is an intravenous epoprostenol, an extremely expensive and intensive management drug that was delivered in minute amounts, with a special pump, directly into Jenna’s right heart chamber. We built a sterile hospital room at home and fast had to become experienced homecare ‘nurses’. Jenna was the only patient in Africa on this drug. Given that it had a 3½ minute half-life, there was absolutely no room for human error. It took an hour to mix the drug daily – an exacting 35-step process.

Ice bags were changed every six hours, pumps rotated, and central lines were changed three times a week. The drug was fed intravenously into her heart 24 hours a day, at a rate that was titrated gradually every month. Jen’s IV epoprostenol had begun. This was the bridge to a transplant; a way to buy our girl more time. Once a patient is on Flolan, they cannot come off it, even for a minute as that could be life-threatening.

Jenna Lowe Logo

If you are interested in seeing what goes into mixing Flolan (the IV Epoprostenol drug the Jenna was on in the last year of her life) then feel free to watch the video here of Jenna’s mom Gabi Lowe and nurse Lizzie Brierley mixing a dose. It was filmed taken in Jenna’s home In January 2014.

PLEASE NOTE: This should not replace an official medical video of how to mix the drug but will give you a good idea of what is required should you be considering and have access to this treatment as recommended by your specialist PH Doctor.

IN DESPERATE NEED OF A TRANSPLANT

Jen was urgently listed for a bi-lateral (double) lung transplant in early 2014. Yet again we threw ourselves into research and quickly realised South Africa has one of the lowest organ donation rates in the world: just 0.3% of the population are organ donors; yet, at least 4,300 South Africans await a transplant on any given day. Who would have thought South Africa – the location of the first-ever heart transplant – would be in such a desperate situation with regard to organ donors.

TRANSPLANT

By now Jen was pretty much bedridden; our telephones never left our side in case we got the call. They were difficult times. We 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 10 December 2014, the call came. A match had been found. We had four hours to move our lives and our precious girl to Johannesburg; along with all her complex equipment, O2 and medication. The evacuation plan kicked into action. For months we had been ready with a detailed document called Operation O2, which listed everything that needed to happen, how it was to happen and in what order, so 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 was wheeled into surgery at 6pm.

Jenna in hospital Jenna in hospital

The surgery was an intense eight hours long. The surgeons said it was one of the most difficult surgeries they’d ever done. The Johannesburg skies punctuated the night with thunder and lightning as we waited.

Jen was wheeled out at 2am. 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 it in ICU. The lungs were an excellent match but her tiny body was wracked by gastroparesis, kidney failure, appendicitis and pancreatitis, among 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.

Jenna Lowe
8 JUNE 2015

Despite our continuous hope that Jenna would recover, she passed away in ICU on 8 June 2015.

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.

Support Jenna's Legacy

We appreciate any and all efforts made to furthering Jenna’s Legacy and supporting our cause in any way that suits you best.

become an organ donor

Register to become an Organ Donor

Less than 0.3% of South Africans are registered organ donors, despite SA being the ‘home’ of the heart transplant. This shocking statistic (we need hundreds of thousands more donors) means at least 4,300 people await a life-saving organ transplant on any given day.

It is quick, easy and costs nothing to register as a donor. Your organs could save up to seven lives when you die.

transfer funds electronically

Electronic Funds Transfer

For electronic fund transfers, the banking details are:

The Jenna Lowe Trust

Bank: First National Bank

Vineyard Road Branch, Claremont, Western Cape, Cape Town, South Africa 7708

SA National clearing code: 250655

Business account number: 6238 7502 761

Swift code: FIRNZAJJ

pay with paypal

PayPal Donation

Pay online with your PayPal password and skip entering your financial information. Or pay even faster with One Touch™, stay logged in and check out without entering your password. PayPal is the faster, safer way to send money, make an online payment, receive money or set up a merchant account.

become an organ donor

Register to become an Organ Donor

Less than 0.3% of South Africans are registered organ donors, despite SA being the ‘home’ of the heart transplant. This shocking statistic (we need hundreds of thousands more donors) means at least 4,300 people await a life-saving organ transplant on any given day.

It is quick, easy and costs nothing to register as a donor. Your organs could save up to seven lives when you die.

transfer funds electronically

Electronic Funds Transfer

For electronic fund transfers, the banking details are:

The Jenna Lowe Trust

Bank: First National Bank

Vineyard Road Branch, Claremont, Western Cape, Cape Town, South Africa 7708

SA National clearing code: 250655

Business account number: 6238 7502 761

Swift code: FIRNZAJJ

pay with paypal

PayPal Donation

Pay online with your PayPal password and skip entering your financial information. Or pay even faster with One Touch™, stay logged in and check out without entering your password. PayPal is the faster, safer way to send money, make an online payment, receive money or set up a merchant account.

PROUD TO
PARTNER WITH

UCT Private and Academic Hospital
Organ Donation Foundation
Millpark Hospital
Rare Diseases South Africa
PVRI

Proud to partner with:

Rare Diseases South Africa
Organ Donation Foundation
PVRI
Millpark Hospital
UCT Private and Academic Hospital

PROUD TO
PARTNER WITH

Rare Diseases South Africa
PVRI
UCT Private and Academic Hospital
Organ Donation Foundation
Millpark Hospital