Thousands of seizures already, but you can help stop them

It was an ordinary day in 2015 when Miane Swarts’ parents, Joleen Swart (29) and Rickey Greyling (30), realised something was wrong with their seven-and-a-half-month-old baby girl.

Little did they know, that day would be the day that changed the rest of their lives.
On the evening of June 28, 2015, around 22:00, Miane just stopped breathing.

Her parents did everything they could to get her tiny purple body to breathe again.

Ambulances were called, and she was rushed to the emergency room at Cosmos Hospital.
At the hospital, after doctors and nurses managed to get Miane breathing again, her parents were informed that it was just phlegm in her chest, and they were sent home with medication.

In the car on the way home, she stopped breathing again.

This is when her parents knew something was terribly wrong with their daughter.
The next morning, at around 08:00, Miane had her first seizure.

It was the beginning of a harrowing journey for Joleen and Rickey, and the biggest challenge Miane would face had just started.
Miane is turning 10 very soon, and the last nine years have not been easy for her or her family. It took almost three years for her to be correctly diagnosed with a very rare form of epilepsy, PCDH19.

She also lost her half-sister, Charike Kotze, to cancer.

She had a very special bond with her sister, and the loss devastated her.
After the hundreds of seizures that she has had to endure in her short life, her brain has unfortunately taken a lot of damage, and her mental capacity is that of a three-and-a-half-year-old.
During each seizure, her brain gets starved of oxygen, and it is critically imperative that the seizures be controlled.

Many procedures, tests, medications, and near-death experiences later, there might finally be a way to resolve her brain seizing in clusters as often as it does.

In an interview, WITBANK NEWS spoke to her mom and asked her how she and Rickey cope with the tough task that has been placed before them, “There are days that we feel like giving up. We feel we can’t take it anymore, but we have to keep our heads up and stay strong.Miane has two younger sisters as well, and we have to be strong for our children.I have only ever seen Rickey cry twice. He is a pillar of strength for all of us. We keep our faith in the Lord strong and know that He chose us specifically for this journey, and will see us through it.”

This is where you can help. Miane needs to undergo surgery for the implantation of a VNS (Vagus Nerve Stimulator).
This device works like a pacemaker and, in short, stimulates the brain’s pulses to prevent it from seizing.

The only setback – her medical aid won’t cover R300 000 of the cost required to get the life-changing device.
A Back-a-Buddy campaign has been set up for Miane, and you can help to be part of the silver lining the dark cloud that hangs over the family.

“There are times we feel like failures as parents because it always feels like we can’t do enough to help our daughter, but we are trying everything in our power. Miane used to have a twinkle in her eyes, but in recent times it has disappeared. All any parent wants is for their children to be healthy and happy, but we need help to make this a reality for Miane,” her mom said woefully.

Anyone willing to donate, can contact Joleen on 079 026 9459 or donate directly on Miane’s Back-a-Buddy page – https://www.backabuddy.co.za/campaign/miane-swart-pcdh19-epilepsy.

The family would be grateful for any help to give their precious princess a better quality of life.

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