Walking for Lyra: a Liver Transplant Journey

My name is Vicky. I am a grandmother, and in May 2026 I will be walking from Jan Kempdorp to Durban to raise awareness about Tyrosinemia Type 1 and to support my granddaughter, Lyra, on her medical journey.

In November 2024 my 4 year old  granddaughter was diagnosed with a rare genetic disease, Tyrosinemia type 1 and only affects 1 in every one hundred thousand children worldwide, this disease affects the organs, mainly the liver and kidneys.

The disease has progressed to stage 4 liver Cirrhosis and rickets. Unfortunately, according to the doctors dealing with the case, they can not provide us with the medication, Nitisinone, due to its cost and availability in South Africa, the doctor said we would be needing roughly R20'000 a month. She will not qualify for a liver transplant without it. They have however provided us with a strict protein restricted diet to follow and support medications. 

With the money you will so generously donate, I aim to be able to get Lyra her medication, as well as hel...