Boy from Rayton with rare disease needs your help

He might be small in stature, but nine-year-old Ethan Visagie is a fighter and an inspiration to many. His mother, Sunell van Schalkwyk, describes her middle son as the bravest person she knows.

This Grade Two learner at Laerskool Rayton suffers from a rare disease called Fanconi anemia (FA), a rare and inherited genetic disorder that affects the bone marrow and overall health. He has been in and out of the hospital for nearly three years.

“Ethan was once a lively and active little boy,” recalled Van Schalkwyk.

“Now he is pale, tires quickly and bruises easily. I noticed something was amiss shortly before his sixth birthday. He was tired all the time, pale and very sleepy,” she explained.

A doctor, concerned about Ethan’s racing heartbeat, suggested he be admitted to a hospital for monitoring and a blood transfusion.

“The drip in his little arm caused a severe infection, and he was rushed into theatre for emergency surgery,” Van Schalkwyk said.

A week later, Ethan was admitted to the Universitas Hospital in Bloemfontein for a bone marrow test, which confirmed the diagnosis of FA. A full-body scan followed, revealing a hole in his heart’s aorta.

An infection in Ethan’s heart delayed the surgery to implant a nitinol (nickel-titanium) wire mesh in his heart for several weeks.

“We celebrated his birthday in the hospital, and Ethan spent most of that year there, which meant he missed his first year of school. This is why he is a year behind,” she explained.

Their lives have since been filled with hospital visits, medical tests, treatments and constant care.

“Despite everything he has been through, Ethan continues to smile and inspire everyone around him. Sometimes I think Ethan is emotionally stronger than I am.

“He takes all the probing and needles in his stride. I think he secretly likes having his mommy to himself,” said the mother of three.

Ethan has an older brother, Janré (11), and a younger brother, Aydan (3). He mostly spends time indoors playing on the PlayStation gifted to him by the Reach for a Dream Foundation.

Although he also enjoys riding his bicycle, he tires quickly. Van Schalkwyk must constantly monitor Ethan’s sugar intake and watch closely for symptoms.

“He is not allowed to play any sport because it could aggravate his heart condition. He bruises easily, and any fall can cause problems.”

Since relocating from the Free State to Rayton, even a mild cold means he must go to the Steve Biko Hospital in Pretoria, the nearest facility capable of treating his condition, because the local clinic isn’t equipped for cases like his.

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The symptoms of FA include fatigue, pale skin, shortness of breath and an increased heart rate due to a low red blood cell count.

A low platelet and low white blood cell count increases susceptibility to infections, easy bruising and bleeding, including petechiae – small red or purple spots on the skin.

This disease often leads to childhood cancers, so constant monitoring is vital. A bone marrow transplant is Ethan’s best hope for recovery, but finding matching donors has proved difficult.

“All family and friends have already been tested, and we are not a match,” Van Schalkwyk told the Streeknews.

She now pleads with fellow South Africans to register as bone marrow donors.

“If not my child, then another might be cured by your donation,” she said.

Although she has a support structure, this single mother described their situation as emotionally, physically and financially overwhelming.

“Between the rising cost of petrol to get to the hospital, medical supplies and things Ethan needs day to day, I’m asking for help from anyone who feels moved to support us,” she said.

A Back-a-Buddy campaign was launched to help fund hospital visits, medical essentials and ongoing care.

“If you’re unable to donate, please consider sharing this campaign; it truly means the world to us,” Van Schalkwyk concluded.