Ruby's heart condition not an episode of Grey's Anatomy – Krugersdorp News

Ruby was diagnosed with a rare, yet very destructive disease called Restrictive Cardiomyopathy, 19 months ago, and the doctor only gave her 24 months to live. Time is running out for her.

Most 15-year-old girls want fancy clothes, cute shoes and tickets to their favourite boy bands concert. But Ruby Ballack just wants to live to see her next birthday.

She was diagnosed with a rare, yet very destructive, disease called Restrictive Cardiomyopathy 19 months ago and at that time the doctor only gave her 24 months to live.

Time is running out for Ruby. She recently had a 3,2cm blood clot in her heart. Luckily it has dissolved. Due to poor blood flow in her heart chambers there is a major risk of blood clots forming again. And lets not even mention the three ICU admissions she had in December 2016 alone.

Also read:Hope towers over teens short life expectancy

During a recent visit to the hospital, Ruby was very ill and spent a few days in ICU. Photo: Submitted

Ruby also experiences tremendous pressure on her heart because of the accumulation of fluid in her hearts lining. She has had multiple pericardial taps to remove the fluid, but because it accumulates within weeks, the fluid causes ongoing incredible pressure, shortness of breath and pain.

Recently her chest pains have become severe, her fatigue is unbearable, and her health has deteriorated by the minute. But not all is lost for Ruby. She is still waiting for the life-altering phone call that could save her life.

Ruby is on the transplant list and is waiting for both a heart and lungs. In the past year there have been two possible referrals for matching donors, but due to medical reasons, they did not materialise.

Its exhausting to feel ill all the time, said Ruby. And when moms phone rings late at night, I always think it might be THE phone call that gives me a heart.

Despite everything, Ruby and her family remain positive and hopeful. Wanda, Rubys mom, said she also anticipates the call every day, but knows that someone has to die for her daughter to live. We have family and friends who have lost their precious children and donated their organs to save the lives of others, while experiencing the utmost grief, said Wanda.

Ruby underwent numerous blood tests during the past few weeks and will continue to have her blood drawn to make sure there are no complications. Photo: Submitted.

They are mourning their loss daily and their lives will never be the same again. We are not praying for a donor or for organs we are praying that when a family is approached whos loved one could be a match for Ruby, they will find it in their hearts to say Yes.

She also said that they arent the only family going through the tough trial of waiting for an organ.

More than 4 300 people are on the transplant list, and I know each and every one of them is going through the same hard time as we are. In a good year, only about 515 patients receive their second chance at life.

Rubys veins are even visible through her knuckles due to her illness.

This is why Wanda, like other mothers, is an organ donor. They know that something good can come from someone elses death. One persons organs can save seven lives.

Wanda also stresses that there are a lot of misconceptions when it comes to organ donation. Being an organ donor is completely free. You can be on the organ donor list without paying any monthly fees. Your family wouldnt have to pay for any medical costs if you donate your organs.

There are also other misconceptions when it comes to the process of donating organs when you die. When you are declared brain dead, the doctor will approach your family and inform them that you are an organ donor. They then ask your familys permission to harvest your organs. The ultimate decision stays with them.

Ruby was diagnosed with a rare, yet very destructive disease called Restrictive Cardiomyopathy, 19 months ago, and the doctor only gave her 24 months to live. Time is running out for her.

You can also choose which organs you want to donate and which you want to keep, and it takes only a few minutes to register as an organ donor.

If you are not a registered organ donor yet, please consider becoming one, as you can help save many people like Ruby. You have the power to change the statistics, said Wanda.

Visit http://www.odf.org.za for more details about organ donation.

Do you perhaps have more information pertaining to this story? Email us at krugersdorpnews@caxton.co.zaorphone us on 011 955 1130.

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Ruby's heart condition not an episode of Grey's Anatomy - Krugersdorp News