Germiston teen still hopeful for life-changing surgery

The story of Juanevieve Grobler, who once captured the hearts of the Germiston community as a brave 12-year-old in need of life-changing surgery, has entered a new chapter.

Now 18, Juanevieve continues to live with the same rare and complex medical conditions that inspired her parents, Jacques and Mariè Grobler, to seek public support years ago.

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While her long-awaited surgery in the United States has not yet taken place, her family has reassured the community that the funds raised remain safely preserved for their intended purpose.

Juanevieve was diagnosed with multiple conditions, including Klippel-Trenaunay-Weber (KTW) syndrome, Proteus syndrome, lymphedema, tracheomalacia, partial KTW syndrome, and severe clubfeet.

These conditions have presented ongoing challenges throughout her life, affecting her mobility, immune system, and overall health.

At the time, the Grobler family formed an NPO, Juanevieve’s Unique Angels, to support her medical journey and raise awareness, while also assisting other children living with similar conditions.

The community responded with compassion, helping the family raise funds for a specialised procedure in the United States under the care of renowned paediatric orthopaedic surgeon Dr Matthew Dobbs.

The surgery was estimated to cost over $50 000 (approximately R821 000).

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However, the onset of the Covid-19 pandemic brought unforeseen delays. International travel restrictions, medical backlogs, and safety concerns forced the family to pause the process. Personal challenges, including her father’s health, also contributed to the delay, as both parents are involved in fundraising and are Juanevieve’s primary caregivers.

Speaking to Germiston City News, Juanevieve’s father confirmed that all funds raised over the years have been securely preserved.

“We want to assure everyone who has donated that the funds are still safe and have been reserved strictly for Juanevieve’s surgery,” he said.

Despite the delay, the family has not lost hope. Juanevieve, now a young adult, continues to show the same resilience and vibrant spirit she was known for as a child. She still enjoys singing and embraces life with courage and determination. She is also planning to study and build a future for herself.

“It was said I would never make it to 16 years, and here I am still breathing and having just turned 18 years old. I don’t take God’s grace or my parents’ constant support for granted.

“It has given me the strength to push on despite the challenges. I’m looking forward to the surgery, even though the recovery is going to be long, but I am hopeful for the results,” she said.

She added that her health has been challenging, with ongoing pain and difficulties in daily life. She is no longer able to walk as she used to due to pain, but hopes the surgery will change that.

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Her parents have remained committed to treating her like any other child, ensuring she grows up with confidence and self-awareness.

“We have always taught her that although she may look different, there is nothing wrong with her mind. She must know her strength and her boundaries,” her mother shared.

The Groblers said their journey has been one of faith, patience, and unity, and they remain determined to see Juanevieve receive the necessary treatment.

“When we were told of Juanevieve’s condition, we did not expect that it would take this long to get her the help she needs.

“The journey has been difficult and financially challenging, but we are grateful for the community who have been supportive. That gives us the strength to carry on and fight for our daughter,” said Mariè.

They also continue to advocate for greater awareness and support for children living with rare conditions, noting the lack of sufficient support structures in South Africa.

The Grobler family will have to relocate for the surgery, as recovery is long and the procedures are not all done at once. Jacques said the family hopes everything goes well.

As Juanevieve steps into adulthood, her story remains a powerful reminder of resilience, community support, and the importance of holding onto hope even when the journey takes longer than expected.