Mom shares ‘legacy of resilience’ in book

Gabi Lowe with her book about her daughter Jenna, Get Me to 21.

Jenna Lowe died three months before her 21st birthday from a rare lung disease, and now her mother has written a book that tells her daughter’s heart-warming and inspiring story

Gabi Lowe, of Claremont, wrote Get Me to 21 in nine months. It tells of the struggle the family endured fighting for Jenna’s life in the four years of her illness and Gabi’s own efforts to raise awareness about pulmonary arterial hypertension (PH).

“She was diagnosed with a very rare lung disease called PH, when she was 17. Before then, she was a normal, active healthy child. Then she started showing signs of breathlessness and it took a long time to find the right diagnosis,” says Gabi.

“PH has nothing to do with how much air you take in; it has everything to do with the fact that the veins and arteries in the lungs are blocked and patients cannot absorb the oxygen.”

Jenna was a healthy, active child, who went to Herschel Girls’ School. In matric she was made deputy head girl, even though she was sick.

Gabi says her daughter was a born leader and a top academic — one determined to finish school. Jenna wrote her matric exams in a private room at the school on an oxygen machine and using a mobility scooter.

Jenna went on to study social sciences and philosophy at UCT in 2014, but as her illness got worse she was emergency listed for a double lung transplant.

“That is when we realised how bad the organ-donation rate is in South Africa,” says Gabi.

In October 2014, Jenna, at 19, started her #Getmeto21 campaign which is on the website www.getmeto21.com

From her sick bed, she made a video inviting the entire nation to her 21st birthday. In the video, she pleaded for people to become organ donors.

“In order to make it to 21, I am going to need new lungs,” Jenna says in her video.

Within three months of Jenna’s video, there were 20 000 new organ donors.

Jenna had her double-lung transplant on December, 10, 2014, but tragically she died six months later, on June 8 2015.

Gabi says it has not been easy. She has a younger daughter, Kristi, who is 21. Kristi was 18 when Jenna died, and the two of them were inseparable.

“Her turning 21 recently was difficult; suddenly she is older than her sister,” says Gabi.

Being at Jenna’s side for the six months after the surgery was the hardest thing she had done in her life, she says.

“She was in the intensive care unit at The Milpark Hospital in Johannesburg for 187 days. I was at her side every day. We moved to Johannesburg within four hours after we got the call for surgery. While waiting for the transplant, I was mixing medication for her daily.”

Gabi was running a marketing consultancy at the time and had to close her business to care for Jenna full-time.

Writing the book was very painful but also healing, she says.

Since Jenna died Gabi has been through several big life changes, including studying to become a life coach.

Two years ago, she started her practice, The Coaching Nest, which provides life coaching, leadership coaching, young-adult and resilience coaching.

Her family though, still has some challenges, as her husband, Stuart, has cancer and is currently undergoing treatment.

Gabi says her main reason for writing the book was to share Jenna’s legacy.

“It is a legacy of extraordinary emotional resilience in the face of the most heinous challenge,” she says.

“It is also a legacy that has changed the landscape of PH and organ donation in South Africa, a story that will continue to help thousands.

“Every family, whether they are dealing with rare disease or not, faces adversity. There is much to be learnt from our journey.

“There was something about Jenna that was extraordinary — her levels of courage, her levels of integrity and authenticity; she taught us so much, and the journey touched so many. I wanted to share this with the world and not only South Africa.”

The Jenna Lowe Trust, a non-profit organisation, raises public awareness about organ donation and PH. Get Me to 21 was launched at the beginning of the month at Exclusive Books in Claremont. The book can also be bought at www.jennalowe.org where 10% of the proceeds will go towards the Jenna Lowe Trust.