Get me to 21. Gabi Lowe

was having a rough time. This made it especially hard to share the impossible truth of Jenna’s prognosis with Kristi. It was a lot for our family to deal with and we needed help. I searched for a therapist who would be the right fit to help guide us through the multiple ongoing trauma.

      And on a practical level, now that we had clarity we needed a treatment plan for Jenna.

      The lioness in me had awoken and I wasn’t going to stop. I drowned myself in medical journals. How could we extend and improve Jenna’s quality of life? What therapies were available and where could we find them? What did her prognosis really look like and what could it look like? How could I access the right treatments? Did we need to supplement our local team of doctors with the best expertise in the world? The literature described three pathways to treatment but on the southernmost tip of Africa we had only one, Sildenafil/Revatio. That was not good enough. We needed to find and fund the treatments she needed.

      We saw Prof. Wilcox every two or three weeks and Jen kept a meticulous record of her symptoms. It showed us she was systematically and consistently getting worse. We needed additional treatment, fast. I’d started speaking to people around the world, and one particular woman in the UK, who’d been a PH patient for many years, gave me incredible hope. Multiple treatment had successfully extended her life. She was on a drug called Bosentan and had been on it (as well as Sildenafil and Warfarin) for more than a decade. I wanted to get my hands on it.

      Prof. Wilcox’s office was small, messy and piled high with stacks of paper files. It always came as a surprise to me when he found Jenna’s file. I kept copies of just about everything I could just in case we couldn’t find something. We had developed a good relationship but at times it was also exasperating.