Hope towers over teen’s short life expectancy
Restrictive Cardiomyopathy has changed this 14-year-old's life, but she still lives every day to the fullest.
Now almost 15 years old, Ruby Ballack’s chances of living a long life remain slim.
At 13, Ruby was was diagnosed with a rare heart condition called Restrictive Cardiomyopathy. Her mother, Wanda Ballack, who recently become a volunteer for the Organ Donor Foundation, told the News that one in a million children has this condition, and Ruby has it.
“The heart muscles become stiff and the heart cannot pump blood to the rest of the body properly. The result is that blood accumulates in the upper two heart chambers called the atrias,” she explained.
A year ago, Ruby was given three years to live. When her mother told her this, Ruby simply answered: “Mommy, you know what, it’s in God’s hands.”
“I’ve always known,” she told the News on Friday 13 May.
In November last year, the News published an article about Ruby, just after she had found out about the disorder that restricts her activities. Chest pain, heart palpitations, shortness of breath and fatigue are all symptoms Ruby has to deal with while waiting for the miracle operation that would save her life – an organ transplant.
Ruby’s doctor said last year that young donor organs are very scarce and her pulmonary pressure is very high, making a heart transplant for this aspiring artist close to impossible.
“Ruby underwent a right and left heart catheterisation procedure in December, after which her doctors disclosed that the pulmonary pressure did not drop and that the damage to her lungs is permanent. This precludes her from ever receiving a heart transplant,” Wanda said. Ruby now has to have a heart-and-lung transplant, and not one or the other.
“There have only been two such transplants in South Africa in the last six years,” Wanda said.
In April, Ruby was declared fit for such an operation by the Milpark Hospital.
Both Ruby and Wanda are actively spreading awareness about this rare disorder while waiting for the big phone call – the one telling them that a donor heart and lungs have become available.
Ruby is not on a medical aid, and relies entirely on public hospitals and health services. She has a non-profit fund, and would appreciate any donations.
Wanda is planning a Walk 4 Ruby for 16 June. If you would like to help Ruby, contact Wanda on 082 773 9053.
Initial article about Ruby:
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