IT is Day 24 and Vicky Verster, a Northen Cape grandmother on a mission to raise awareness about Tyrosinemia Type 1, has arrived in Pinetown.

Tyrosinemia Type 1 is a rare genetic metabolic disorder that causes severe liver damage if not properly managed.

Together with her son Ryan, the duo left the comfort of their home to walk from Jan Kempdorp to Durban in support of Lyra, on her medical journey.

She will finish her journey tomorrow, Thursday, May 28 at the Pavilion Shopping Centre.

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Speaking to the Highway Mail at a Bed and Breakfast, which the owner Lorraine Bell was more than happy to accommodate them free of charge, Verster smiled and said, “I can not believe it is almost over.”

She said her granddaughter Lyra became ill with flu-like symptoms in October 2024 but did not recover.

“She was admitted to Kimberley Hospital, where numerous tests were conducted. Due to concerns about her condition, Lyra was referred to Bloemfontein for further evaluation, including a kidney biopsy.

“It was there that a doctor recognised her symptoms and ordered additional specialised testing.”

The day after her first birthday, Verster said her granddaughter was diagnosed with Tyrosinemia Type 1.

Lyra now requires ongoing specialised care and assessments at Red Cross Children’s Hospital in Cape Town, where she may be considered for a liver transplant.

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Before this can happen, the caring grandmother said several trips to Cape Town are required for testing and evaluation.

“If approved, Lyra’s mother will need to relocate to Cape Town for three to six months, which includes accommodation, food, transport, and basic living expenses. We live far from Cape Town, which makes travel and relocation costly.”

She said this campaign is focused on raising funds to help cover travel for medical assessments, temporary accommodation in Cape Town, food and daily living expenses during relocation.

Verster added that this walk is also about awareness.

“Tyrosinemia Type 1 is rare, but it is real. There are other families in South Africa already living with children diagnosed with this condition, many of whom struggle to access treatment and support. Greater awareness can lead to earlier diagnosis, better outcomes, and stronger support systems.

“It is such heartbreaking that she can eat very limited food, she loves food but she is forever hungry and does not eat proteins.

At first, they were told that she suffered from malnutrition and we had to give her milk, cheese and meat and little did they know that this was making her situation worse.

“We are grateful that she was diagnosed and we are now looking at solutions. My daughter has been very strong and reads up a lot on this condition which even most doctors are unaware of.”

Even though they had been using a government hospital, Verster applauded the doctors that have been assisting Lyra.

“They have gone over and beyond to help and learn about this disease.”

She also thanked the people that have supported them on this journey.

Along the way, she also had Comrades runners Christel Pelser and Ada Pienaar walking with them in different cities.

“The generosity and kindness has actually carried us,” she said, looking at Bell, the B&B owner in Pinetown.

“We have met fantastic people and I don’t even know how to say thank you to all of them, I am grateful,” she said.

Verster said they did stretches and walked a few kilometres to prepare for this journey.

“I am already thinking of something else I can do to also raise funds for other children suffering from this illness.”

To follow their journey or offer support, visit the family’s Facebook page:
Lyra Needs Our Help Facebook Page

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