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Even if you are not directly part of the Rare Disease Community, I am sure that you have heard of Jenna Lowe.  Perhaps you were even lucky enough to meet this young lady.  Maybe you have visited her website, & became an organ donor when you heard from someone waiting for her lungs how dire the situation is.

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Gabi & Jenna Lowe

Jenna was an inspiring young lady who never allowed her diagnosis to hold her back.  She lived life to the fullest, encouraged & inspired others, & was constantly striving to create awareness around organ donation.  You see, Jenna had Pulmonary Hypertension.


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Jenna was young, bright, beautiful and articulate. Lead SA’s Youth Hero of the Year in 2015, her death was mourned by thousands of people whose lives she had touched. During her short but full life, Jenna and the Lowe family raised much needed awareness around this rare and devastating disease, highlighting the dire need for access to medication and organ donors locally. Although desperately ill, Jenna became the face for organ donation in South Africa through the hugely successful #GetMeTo21 campaign in which she invited all South Africans to attend her 21st birthday celebration by clicking on a link to become an organ donor. Tragically Jenna died three months before reaching her milestone.

Brilliantly written, riveting in all its terrible truth and pain, in this brutally honest memoir Gabi Lowe shares her family’s desperate fight to save Jenna’s life. Despite their tragic loss, Get Me To 21 will inspire you to believe that the ability to face even the darkest and most unimaginable lives deep within us all.

Author: Gabi Lowe studied a BA before embarking on a successful career in media and marketing. In 2011 she was catapulted into a totally new world, that of rare diseases, big pharma and transplantation, filled with massive challenges, learnings, losses and love. Gabi is now a sought-after life coach, facilitator of workshops on emotional resilience and inspirational speaker. She lives in Cape Town with her husband Stuart and daughter Kristi.

(source:  GetMeTo21)


When I heard that Gabi Lowe was coming to Joburg for the launch of her book, I knew I had to be there.  #RareWarrior friends would be there, as well as the CEO of Rare Diseases SA.  Jenna’s story had touched me & I was desperate to learn more about this girl who has left such a footprint on the world.

I had tissues at the ready, & appreciated the courage of the entire Lowe family for allowing us a glimpse into the battle they went through as an entire family.  Gabi read from the book for all of us (this is where the tears started), & told us the hard truth about the lack of resources & awareness in South Africa.  There were fellow PH patients in the crowd, as well as another mum who has lost 2 of her children to this dreadful disease.  When I saw Shaakira, my heart broke – I had known her daughter & here she was supporting her “family” & standing up in support of the Lowe’s.  They had leant on one another throughout their journey’s & now they are both grieving the loss of their precious children – how is that fair?

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Humayra Bodhania

Following the launch, I needed some time to process what had been discussed before beginning the book.  I knew it would be a tough one to work my way through, & emotionally I did not know if I was ready.  Realising that a lot of this fear stemmed from the fact that I am relapsing & fearful of what this means for me & my family, I knew I had to just suck it up.  This is a book of bravery, a book of loss, a book of pure love.

Within 2 days I had finished the entire book.  I literally could not put it down, except to clear my head for a few moments when it all became too much.  I felt completely drained as I finished the last page & I was amazed at the strength of the Lowe’s.  Jenna’s story needed to be told, & needs to continue to be shared.  This book was honest & raw, & included excerpts from Jenna’s actual diary.  It showed the truth of what it is like to have a Rare Disease & the fear of the unknown. It showed the hope of a miracle, & the emptiness that follows a loss that cannot truly be explained.  It showed courage.


This book has changed my life – for the better.  And it is a book that will keep Jenna’s legacy alive, whilst continuing to touch everyone who reads it.

The book is available online, or from local book stores in South Africa – I got mine from Exclusive Books at the event itself, & have seen it many times since then.

I leave you with the song that Jenna wrote, & her sister Kristi performed.


Read the book, join the Facebook Group, & sign up as an Organ Donor.  Be the change.


 

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