The Van Tonder family is fighting to save the life of their two-year-old daughter, Xonja, who has been diagnosed with two serious heart defects on top of being born with Down syndrome.

According to her father, Johan, Xonja was diagnosed within her first few months of life with Patent Ductus Arteriosus (PDA) and Ventricular Septal Defect (VSD), conditions that now require urgent open-heart surgery. The family must raise R400 000 to cover the cost of the procedure and related medical care.

At just two years and five months old, Xonja is described as a bright and loving child who brings joy to those around her.

“She is one of the friendliest little girls, always smiling and full of life,” said Johan.

He added that she loves music, swimming and learning new activities with her family, and despite her condition, her spirit remains strong.

However, Johan said her condition has worsened over time.

“Doctors have confirmed that these defects are forcing her small heart to work far harder than it should, affecting her oxygen levels and overall development. Her oxygen levels drop dangerously low, especially while she sleeps. Sometimes her lips, hands and feet turn blue, and she gets sick easily and struggles to rest.”

Her condition has also limited her ability to live like other children her age. She is often unable to be around other children and misses out on school activities and social interaction due to her fragile health.

After numerous hospital visits and delays within the public healthcare system, specialists confirmed that Xonja requires urgent surgery.

Doctors at Dr Yusuf Dadoo Hospital, Rahima Moosa Mother and Child Hospital and Nelson Mandela Children’s Hospital have all assessed her condition. Tests showed the holes in her heart are too large to close on their own and must be surgically repaired. Due to increasing pressure on her lungs and dangerously low oxygen levels, her condition has become critical.

“This surgery is not optional – it is life-saving,” Johan said.

Her surgery was initially scheduled for October, then postponed to January. However, due to unforeseen circumstances, including illness and the passing of a leading specialist, the procedure was delayed again, with no new date provided.

“We have tried everything – calls, emails and follow-ups – but have received no clear answers. Meanwhile, her condition has worsened. We had to borrow an oxygen machine when her levels dropped as low as 34%, and we still struggle to keep them at safe levels,” he said.

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Doctors have warned that further delays could have devastating consequences.

“If delayed any longer, the defects could become inoperable,” Johan explained, adding that a transplant may then be the only option. Without intervention, Xonja may not reach her third birthday.

The estimated cost of her treatment – including surgery, ICU care, hospitalisation, medication and follow-up care – places the procedure out of reach for the family. Private hospitals have confirmed they can perform the surgery, but require upfront payment.

“We never imagined we would be asking for help like this, but when it comes to our daughter’s life, we will do anything,” Johan said.

How you can help:

The family has launched a crowdfunding campaign and is appealing to the public for support. Every contribution brings Xonja closer to the surgery she urgently needs.

“We don’t know how to thank everyone who has supported us. Even a like or share makes a difference,” her parents said.

“If you can’t donate, please share her story. She deserves the chance to grow, to play and to live.”

To assist Xonja, visit: https://www.backabuddy.co.za/campaign/help-us-repair-our-daughter-heart