Miane Swart (9) from Witbank, Mpumalanga, faces a relentless battle against PCDH19 epilepsy, a rare and severe form of epilepsy. Since she was a baby, Miane has endured countless seizures, leaving her with the cognitive abilities of a much younger child. Now, her family seeks the community’s support to fund a crucial surgery that could dramatically improve her quality of life.
In 2015, what seemed like a typical day for Joleen Swart and Rickey Greyling turned into a nightmare that would forever alter their lives. Their baby girl, Miane Swart, only seven and a half months old, suddenly stopped breathing around 10 PM on June 28. Her tiny body turned purple, and her parents frantically tried to revive her as they awaited the ambulance. Rushed to Cosmos Hospital, Miane was resuscitated and initially diagnosed with a minor chest congestion. However, their relief was short-lived.
On the drive home, Miane’s breathing ceased once again. By the next morning, the young child experienced her first seizure, marking the beginning of a gruelling journey for the family. Over the next three years, countless tests and hospital visits eventually led to a diagnosis of PCDH19 epilepsy, a rare and severe form of the condition that defies conventional treatments.
Caption: 9-year-old Miane Swart
Now approaching her 10th birthday, Miane’s struggle with epilepsy has been relentless. The disorder has severely impacted her development, leaving her with the cognitive abilities of a three-and-a-half-year-old. Each seizure she endures deprives her brain of oxygen, causing further damage. Despite numerous medical interventions and medications, her seizures remain uncontrolled, placing her at constant risk.
Miane’s ongoing battle with frequent seizures has taken a significant toll on her brain, and her parents are desperate to find a solution. Her condition requires continuous monitoring and immediate intervention during seizures to prevent serious harm or even death. The potential breakthrough they’ve been hoping for lies in the implantation of a Vagus Nerve Stimulator (VNS), a device that functions like a pacemaker for the brain, helping to regulate its electrical activity and reduce the frequency and severity of seizures.
Caption: 9-year-old Miane Swart
Unfortunately, the cost of this life-saving procedure is a staggering R370,000, and their medical aid will only cover a small portion, leaving a shortfall of R300,000.
The family has launched a campaign on BackaBuddy to raise the necessary funds for Miane’s surgery.
In an interview with WITBANK NEWS, Joleen spoke about the emotional and physical toll this journey has taken on their family. “There are days when we feel overwhelmed and want to give up, but we have to stay strong for our children. Rickey is our rock, holding us together through the toughest times. Our faith keeps us going, believing that we were chosen for this path and that we’ll see it through.”
To date, the campaign has raised R209 000 from 69 generous donors, but they still have a long way to go to reach their goal. Miane’s mother has also had to switch to a different medical aid to cover the cost of her medications, which still amounts to over R3,000 per month out of pocket.
The courage and resilience of Miane and her family is an inspiring story of hope in the face of adversity. As they prepare for the upcoming surgery, they remain hopeful that the VNS will be the key to a brighter future for their beloved daughter.
To support Miane for her VNS surgery , visit her BackaBuddy campaign:
https://www.backabuddy.co.za/campaign/miane-swart-pcdh19-epilepsy
Caption: Help give 9-year-old Miane Swart a better life