Durban - Giving birth to a child will fill your heart. But watching a beloved child struggle for breath, will break it.
The parents of 5-year-old Amy Miller, who suffers from a congenital heart defect that threatens to cut her life short, are appealing to readers to consider organ donation so that in case of death, you may pass the gift of a longer life to their “little fairy princess”.
Amy was diagnosed with Hypoplastic Left Heart Syndrome. This means that the left side did not develop, leaving the right side to take all the strain.
This also caused her heart’s muscles to develop abnormally, and now, her only hope is a new heart.
Amy has already had heart failure three times and three major heart operations.
Her mother, Natasha Miller, described Amy’s condition as an uphill battle and said Amy had been through a tough eight weeks.
“She has been in and out of intensive care for eight weeks. Her body is not responding well to medication so this means the urgency for a new heart has increased. We are definitely running out of time,” she said.
She described Amy as a wonderful child who is bubbly and full of life.
“She loves to sing. She loves Katy Perry and loves to dance to all her songs. She is full of laughter, but lately her health has been deteriorating rapidly and this is affecting her emotionally. It has also been difficult on us as parents.
“We are trying our best to spread the message out there, hoping that Amy will soon get a new heart.
“All we can do is hope that it reaches as many people as possible and that more people sign up to become organ donors,” she said.
Another issue is that Amy is B-positive – a rare blood group that only constitutes 12 percent of the population.
“This makes things even more difficult. For two years we knew that she would need a new heart at some stage but we had no idea that it would be this soon. We thought our little girl would only need it when she was a teenager.”
Miller said her life as a parent was an emotional roller-coaster.
“As a parent you want to pray for your child to survive, but in this case we are sort of dependent on a tragedy so that we can save our daughter. It is difficult.”
Eight weeks ago, the Millers registered to become donors and they have registered Amy and their younger daughter, Layla, too.
They have also started online campaigns to spread the message: #ANewHeartForAmy and #AmyisBPositive, they have created a website, a Facebook group and an Instagram account.
“I urge other parents to please become organ donors and to register their kids to become organ donors as well. I know this sounds frightening and is something that most parents would never think of doing, but please, put yourselves in our position.
“There are so many people, kids and adults who need organs. You could save a life.”
When asked if they were prepared to travel abroad, Miller said: “We wish. We would go to any length. But when you get a donor, you have only four hours to conduct a transplant.
“This is how long the heart will last for, until it is transplanted.”
To be a part of Amy’s journey or for more information on the condition visit www.heartkids.co.za
How to become an organ donor:
* Phone the Organ Donor Foundation Toll Free 0800 22 66 11 or register online at www.odf.org.za.
* Carry an Organ Donor Card in your wallet and place an Organ Donor sticker on your ID and on your driving licence.
* It is most important to discuss the decision with your family. Ask them to honour your wish when you die.
Who is eligible to become a donor?
Anyone younger than 70 years old, who is in relatively good health. You don’t have to be in tip-top shape, but you must be free of diseases such as cancer, diabetes, hepatitis or HIV/Aids.
Are there costs involved?
There is no cost or payment involved in organ donation. The state or hospital will cover all medical expenses from the moment brain death is diagnosed.
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