Girl who inspired thousands to join donor registry dies

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Jenna Lowe was diagnosed with primary pulmonary arterial hypertension aged 17 after becoming unable to walk any distance without collapsing
Attempts to treat the teen failed and she was told she needed a transplant
But there is a chronic shortage of donors in South Africa - so she launched a campaign to get people to sign up so she could reach her 21st birthday
Jenna did finally get her transplant - but tragically died this week, aged 20

Published: 08:17 EST, 12 June 2015 | Updated: 08:21 EST, 12 June 2015

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A girl dying of a rare condition who invited an entire country to celebrate her 21st birthday with her in a desperate bid to find an organ donor has tragically passed away just weeks before her big day.

Jenna Lowe was told aged 19 that without a double lung transplant, she would be dead before she reached her 21st.

But, in South Africa, a country where just 0.2 per cent of the population are registered organ donors, the chance of finding a match was minimal.

So Jenna decided to do something about it herself: she started a campaign to get her to 21.

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Terrifying: Jenna Lowe was told aged she would need a double lung transplant if she was going to have the chance to make it to 21 when she was just 19 - but the odds of her finding a donor were very low

Inspirational: So Jenna fronted a campaign inviting the entire country to her 21st birthday party - as long as they signed up to be an organ donor, statistically increasing her chances of getting a transplant

Bittersweet: And it worked - Jenna did get her transplant, but tragically died from complications six months later, a four months before she would have reached her 21st birthday

The idea was simple: everyone was invited to her party - but had to sign up to the organ donor registry first.

'I'm 19 and I am planning my 21st birthday party,' she explained on a video launching her campaign, Get Me to 21. 'And I'm inviting you.

'Now, that might seem a little bit odd because I probably don't know you, but I would like you to come anyway.

'And I want you to bring your friends. Because, the more people there are, and the more people that sign up now, the more likely it is that I will be able to join you.'

But tragically, Jenna - who inspired thousands to join the register - will not be there to celebrate.

She lost her fight on Monday. She received the transplant she desperately needed to reach the milestone birthday, but tragically she succumbed to complications following the operation.

Her last months, her devastated mother Gabi told CapeTalk Radio, were marked with 'true grit and true grace'.

'It was more than anyone should have to bare,' she said. 'But we are trying to remember what her wishes were, because she gave her life for that.'

Rare: Jenna had been a perfectly healthy teenager until four years ago, when she found herself struggling to breathe. It was finally diagnosed as primary pulmonary arterial hypertension after months of tests

Debilitating: Her illness has been described as being the equivalent of holding your nose and breathing through a straw, and often left Jenna needing to take time away from school or university

Determined: Jenna never let her illness stop her. She became deputy head girl, graduated high school with seven distinctions and went on to start university, although always reliant on her scooter Chase (above)

Celebration: She even made it to her matric dance at the end of secondary school

Terrifyingly, just four years ago Jenna was an incredibly fit teenager, who danced, swam and went to the gym.

So when she first began to get breathless, it immediately rung alarm bells with her parents.

The initial diagnosis was asthma, and, believing it to be nothing worse, Jenna went on a three-month exchange to Sydney.

WHAT ARE THE SYMPTOMS OF PULMONARY HYPERTENSION?

The most common symptoms caused by pulmonary hypertension are:

Breathlessness
Fatigue
Dizziness
Fainting
Chest pain, especially after exercise
Fluid build-up, such as ankle swelling

Source: British Lung Foundation

On her return in December she was markedly worse; by January 2012 she couldn't walk more than a couple of metres without collapsing.

But still tests could not find out what was wrong with Jenna. Then, one final scan finally revealed the devastating truth.

'Five hideous months’ worth of tests meant that the reality slowly started to dawn on us – our beautiful Jen had a life threatening, degenerative lung disease called primary pulmonary arterial hypertension,' her parents recall on Jenna's website.

Life expectancy for those diagnosed with PAH is just a few years - and Jenna was just 17.

But despite her debilitating condition - which feels like 'blocking your nose and breathing through a straw for an hour', according to Jenna's website - she continued with her life, including attending the exclusive private secondary Herschel, one of South Africa's top schools.

A tribute on the school's website this week remembered how Jenna would 'whizz around campus on Chase, her motorised scooter with an oxygen tank on the back' as she went to class and fulfilled her duties as deputy head girl.

'She inspired all those around her with her wonderful smile and never-give-up attitude,' the tribute said.

Transplant: But when she reached 19, it became clear the drugs she was taking to control the disease were not working well enough, and doctors told her she would need a transplant (pictured in hospital)

Statistics: Now she wasn't only fighting against a disease, but also poor odds on finding a suitable donor

Dedicated: Her devoted family - father Stuart, mother Gabi and Kristi - have been supporting Jenna's campaign every step of the way, and spoke movingly this week

Success: Since the campaign started, more than 5,000 people have directly signed up through the website - but thousands more have signed up through South Africa's organ donation

Jenna went on to matriculate with seven distinctions, despite sometimes being barely able to get out of bed, and began her studies at the University of Cape Town 'still achieving ridiculously good grades'.

'It has not been too easy arriving at university with an oxygen machine, mobility scooter and a drug pump,' she admitted in her blog.

'All the normal first-year anxieties about acceptance, the workload and finding routes around campus felt a little bit worse when I considered all the equipment that I cart around with me.'

We didn’t have a choice of who to use for the campaign. She is the only one who was brave enough to put her own mortality aside to make a world of difference. And she has changed the world of organ donation in South Africa.

Kirk Gainsford, Lowe Cape Town

But all the while, it was becoming clear that Jenna's health was deteriorating and finally, aged 19 and in her first few months of university, she was told she would need a double lung transplant in order to make it to her 21st birthday.

Worse, South Africa - with a population of 52million has some of the fewest organ donors in the world: there were just seven lung transplants in 2013. In comparison the UK, with its population of 64million, conducted 200.

'I had no idea how much there's a shortage and a need for organ donors in South Africa,' Jenna told News24 in November last year.

'Personally, it was really scary - finding out I might not have the organs I need.

'But then I realised it's not just me. Approximately 4,500 South Africans are on the transplant list and many of them die waiting.'

And that was why Jenna decided to launch Get Me to 21 - an invite to her birthday party, then a year away, and a call to people to add their names to the donor list.

It was, she said, a plea for people to come forward and save a life.

'Those of us waiting for organs are human beings, with our own faces and names, and our own hopes and dreams,' she said.

Jenna Lowe invites the world to her 21st birthday party

Tribute: Mum Gabi (right) said this week that Jenna faced her final months with 'true grit and true grace'

Graceful: Jenna's father Stuart, pictured with his daughters, said he remained 'inspired not only by what she did but how she did it, from her bed not being able to breathe properly' when interviewed this week

Within a month, 8,000 people had signed up to become donors - the most who had ever done so in one month.

Then the news arrived the Lowe's had been waiting for: a donor had been found.

The operation took place in December, and recovery was slow. But by February, Jenna felt strong enough to update her blog with two entries. In the second, she revealed she had been off oxygen for five whole days.

'To be free of the the plastic across my face and the hissing in my ears, to not be tethered to a machine… it’s the most incredible feeling,' she said.

Jenna promised to write again soon, but the post would prove to be her last.

Last month, Jenna underwent gastric surgery after complications developed following the transplant, and on Monday, she passed away, aged 20.

But her legacy will certainly live on: in the months since she launched the campaign, 17,476 people registered as organ donors, compared to 7,773 to the same period the year before. In particular, there was a noticeable rise in the numbers of 25 to 35-year-olds adding their names.

Samantha Nicholls, executive director of the Organ Donor Foundation, said: 'She was obviously a very inspiring girl.

'I think she made them realise it is a real person waiting for an organ.'

Kirk Gainsford, of Mullen Lowe, who worked with Jenna on Get Me to 21, said: 'We didn’t have a choice of who to use for the campaign.

'She is the only one who was brave enough to put her own mortality aside to make a world of difference.

'And she has changed the world of organ donation in South Africa.'

It certainly seems that way: in the last two days alone, an extra 2,400 people have signed up - almost the same amount as would usually join the register over an entire month.

Speaking after her death, her father Stuart told the Cape Argus: 'We remain inspired not only by what she did but how she did it, from her bed not being able to breathe properly.

'Through it all, she remained incredibly graceful. Her will to live kept us going.'