Why has Jenna Lowe asked us to help her #GetMeTo21? It's been all over social media lately, but so has everything else, so little surprise if you're not aware of the dire organ donation situation in SA...
October saw a spike in tweets with the #GetMeTo21 hashtag.
But this is not your average 21st birthday hype. It's a tragic true story unfolding in the heart of Cape Town and one of the most effective ways I've seen to raise awareness of the need for organ donation. Simply put, it's the story of a girl in desperate need of a double-lung transplant. Now she's offering to host the 'best 21st party ever' to those who sign up to become organ donors when they die. Yes, every single one of them is invited.
Watch the official #GetMeTo21 video below, posted on Youtube on 7 October, to get Jenna's full story:
That's why Jenna was named the Western Cape Lead SA Youth Hero for October - "instead of allowing the disease to get her down, Jenna is fighting it head on while raising awareness about organ donation," explains Lead SA.
Right. Now we're on the same page, you'll see why I simply had to contact Jenna to find out more. Unfortunately Jenna's mom Gabi has had to take over replying to her email as she is battling to keep up with limited energy and resources. It's not been plain sailing for Gabi either, as she's been busy with the launch of the Spur Save 7 campaign, and had a parliamentary hearing with Jenna's dad, Stuart in front of the Portfolio Committee on Health - a plea for action on behalf of Jenna to highlight the state of organ donation and transplant statistics in South Africa. Here's what Gabi shared...
A recent picture of Jen and her mom, Gabi Lowe, taken at home
Let's get into the medical details - what's going on, what's the double-lung transplant waiting list like?
Gabi Lowe: Lung transplants are very tricky; the most difficult of all organ transplants. They are only performed in two provinces in SA - in Gauteng and KZN, strangely enough not at Groote Schuur - and there is no way as patients of knowing exactly how long the list is, but it is around 20 for Milpark Hospital, which is where Jen will go. As there is such a very small pool of deceased donors per year, the issue becomes more about a match than it does about where you are on the list, because blood group, size and tissue type are all vital.
Explain what'll happen if Jenna gets the transplant she needs.
Gabi Lowe: We await "the call" with bated breath and much hope every day. When it comes we have six hours total as a family to get to Milpark Hospital in Johannesburg, door-to-door. I have everything waiting and in place, including possible mercy flights, house- and pet-sitters, packed bags. The surgery is long and the first month is critical. Jen will have to be close to the Milpark Hospital for a minimum of six months to a year. This will be tough on our family as our younger daughter Kristi is still at school and has a life and friends in Cape Town, so we will need to do a lot of commuting, but she will come with us at least for the first month until Jen is stable. If Jen responds well to the transplant and works hard at rehabilitation then her life - apart from anti-rejection drugs and immune-suppressants - will change dramatically. For the first time since the age of 16, she will be able to be a normal teenager - dress herself, swim, party, walk, exercise, and not rely on 10 different medications including 24-hour a day oxygen.
Tell us about the lack of awareness of the importance of organ donation, especially in SA.
Gabi Lowe: The lack of awareness is astounding; it's in a dire, dire state. Only 0.2% of our population are organ donors, versus up to 35% in many first world countries. There is a total lack of awareness and education and many misunderstandings and myths that are just not true. There's no centralised procurement system and less than 20 transplant coordinators in the entire country. Spain, which has a similar population to that of South Africa, has 480 transplant coordinators.
Where did the idea of '#getmeto21 come from?
Gabi Lowe: We were initially approached by a transplant co-ordinator as agency Lowe and Partners Cape Town, who do pro bono work for the Organ Donor Foundation had come up with the idea but felt strongly it would only work with the right person driving it. As a side note, there's no relation between us and the agency - it's bizarre as I don't know many "Lowes" spelt the same way but there is no link, we had never met before this. They knew of Jen through all the campaigning she had done to raise awareness for Pulmonary Arterial Hypertension and other rare diseases, and they wanted her to get involved.
Jenna in ICU in July this year, she is now back home and awaiting a transplant
Initially, Jen wasn't ready as she wasn't yet emergency listed for a transplant, but after being priority listed in May this year, and then having a nasty week in ICU in July - click here to read about it - she decided it was time for the next battle of taking on the state of organ donation in South Africa. So we met with Kirk Gainsford and his team from Lowe and Partners and it went really quickly from there, with Jen driving most of the campaign. She has always been very clear on the fact that everything she does has to be totally authentic and real, so there was no scripting involved.
Will you really allow 'party entry' to every single person who signs up to donate their organs when they die? Is there a way to track how many have signed up so far?
Gabi Lowe: Absolutely. Jenna's microsite is connected to the organ donor foundation database, so we know exactly who they are. Plus of course there is Jen's 21st Facebook event group, but you can only be a member if you have signed up, that's where all the planning will happen.
The video was viewed 22k times when I checked on 4 November, roughly a month after the campaign started - what's your ultimate goal?
Gabi Lowe: To dramatically increase the amount of organ donors in South Africa and make it a regular conversation in the media, in order to create a culture of organ donation awareness and education. Currently there are about 200 new sign ups a day, and if you put together the people who have signed up directly on Jenna's getmeto21 microsite - 3,659 as of mid-November - and combine that with the amount of people who have signed on the Organ Donor Foundation page quoting "getmeto21" as their reason, then you are looking at over 7,000 new donors in four weeks. If that's what one very sick child can do, imagine what can be done with proper awareness and education.
Jenna receiving an Award for Academic Excellence in December 2013 from Helen Zille and the Western Cape Education Department having achieved 7 distinctions for Matric and being one of the top 30 students
What are your thoughts on the Spur 'Save 7' organ donation awareness campaign?
Gabi Lowe: We couldn't be more delighted and have been very involved in helping with this campaign. As a result of Jen's getmeto21 campaign, the Spur Foundation has seen a need, gotten involved and put everything they have behind helping drive awareness for organ donation in South Africa. It's fantastic, exciting and will hopefully work wonders in helping to change the landscape of organ donation in South Africa.
There you have it.
Don't forget to watch Jenna's sister Kristi sing the song she penned with Jenna, 'I need more time'... I dare you to watch it and keep your eyes dry! The song's available from the iTunes store, click here to download:
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