WENTWORTH’S Ford Hartze, a 14-year-old, faces each day with an awareness that breathing for him is a luxury. While other teenagers navigate school, friendships and think about their aspirations, Ford’s world revolves around hospital visits and the quiet hum of the machine that helps keep him alive.

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He was diagnosed with Eisenmenger Syndrome, a rare and life-threatening condition that affects the heart and lungs necessitating transplants. The condition occurs when the blood vessels in the lungs have become scarred, narrow or stiff. This creates massive pressure. Because it is too hard to push blood into the stiff lungs, the heart’s natural flow reverses and it causes more oxygen-poor blood to bypass the lungs entirely, dropping the body’s overall oxygen levels. As a result of the syndrome, Ford requires oxygen 24 hours a day.

Against all odds

Glynnis Hartze, Ford’s grandmother, said that Ford’s health challenges began while his mother, Alecia Hartze-Saville, was pregnant.

“During a check-up the specialists told us that Ford’s heart had been growing abnormally. The left atrium grew at a slower pace compared to the right. They said that Ford would probably survive for only three days after birth,” said Glynnis.

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However, a faithful and determined Alecia went through with the pregnancy. She eventually gave birth to a strong and healthy baby. After six weeks, Ford began to encounter issues with his heart, leading to the lungs collapsing. Against all those odds, Ford survived.

Rare condition teaches medical professionals 

Alecia said that the rarity of Ford’s condition meant many medical professionals had limited experience treating it.

“They often told us that they are learning about the condition through his treatment. During the many hospital visits throughout his life, doctors repeatedly told us he would most likely not survive. But he has pulled through every time,” said Alecia.

Ford’s daily routine

Ford’s condition mandates round-the-clock oxygen supply from an oxygen concentrator. Additionally, when Ford sleeps, he has to be connected to a continuous positive airway pressure machine. These machines are vital for his survival, but it also imposes a significant financial strain on the family due to increased electricity consumption. Ford also relies on oxygen cylinders that are not covered by medical aid. “Oxygen cylinders are not something we can go without,” said Alecia.

Growing challenges

Their difficulties extend beyond medical care. Ford currently resides with his grandparents because the family home’s bathroom has an issue with dampness and mould in the wall, which doctors said exacerbate his lung issues. Urgent renovations are needed to make the bathroom safe for his return. The house also lacks a private bedroom where Ford can recover when ill; he currently shares a room with his younger sibling. 

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The emotional and financial toll on the family has been substantial. Alecia mentioned that many of Ford’s medications are only partially covered or not covered at all by their medical aid. She added that a single five-day course of treatment, for example, can cost around R26 000.

A heart with dreams and a future

Despite the severity of his condition, Ford approaches each day with radical optimism. Like many boys his age, he dreams of attending a BMW motorbike show, enjoys visits to the beach and cherishes attending church with his family. However, every outing requires a portable oxygen machine, making even simple family activities financially demanding. 

Calling on community’s help

The family is now looking to the community for support. For Alecia, this appeal is not anything extravagant, but a plea for basic necessities.

“We just want Ford to have the oxygen he needs, a healthy home and the chance to enjoy life like any other child,” she said.

Those wishing to contribute and help support Ford’s tough medical journey can do so by donating to their BackaBuddy or searching “Help Ford Breathe Easier” on the BackaBuddy website. 

Every day that passes becomes a testimony on Ford’s incredible journey.

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