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| BERNAMA PICTURE |
KUALA LUMPUR. When her only child, Shakirah Ariana was diagnosed with a rare medical condition, called Heterotaxy Syndrome, just four days after she was born, single mother Shamila Basir knew she was not ready to give up easily.
Heterotaxy Syndrome is a rare birth defect that involves the heart and other organs that has been misplaced (within the body), missing or deformed. It occurs in an estimated four per one million live births.
Despite doctors slowly giving up on Ariana, Shamila, 39, believed that nothing was impossible and decided to go ahead to give Ariana a full life.
"Beginning this year, I started cupcakes and cookies business from home via a Facebook page, 'Ariana's Cupcakes Addiction', to help raise fund Ariana's final and most crucial surgery. This is a lifesaving heart surgery.
"The surgery called Fenestration Fontan Procedure, that is scheduled to take place at the Boston Children's Hospital in the United States on August 8, will cost a whopping RM360,000," she told Bernama.
In the seven months since she first started this effort, she has managed to raise close to RM170,000, and was humbled by the generosity of those who have heard her story through friends and Facebook.
Shamila said three-year-old Ariana was born with a complete atrial ventricular septal defect (CAVSD), one ventricle, one valve, mild atrioventricular valve regurgitation (AVVR), severe pulmonary stenosis (PS), double outlet right ventricle (DORV).
She is also asplenic, which means she does not have a spleen.
"I remember looking at Ariana and asking her what is it you want mommy to do for you. I do not know whether it was the angels I heard, I received a message asking me to give Ariana a full life.
"That was the reason why I make sure that my only child receives the right surgeries and medical requirements," she said, adding Ariana in Arabic, meant a full life.
Shamila has pulled her resources together to pay for the first two surgeries that Ariana needed to stay alive and her daughter's fighting spirit during the recovery stages was the only thing that gave Shamila hope as she prepares for the final and most crucial surgery.
Ariana's first surgergy took place when she was two months old, while the second was at 15 months old.
"Athough doctors have said that life expectancy for children with such conditions is nothing more than a year old, Ariana has celebrated her third birthday in April.
"So, I have made the right choices by doing the right thing for her. I am so humbled by the kind hearts and generosity of those who have heard Ariana's story and are supporting me for the final surgery," she said.
With a sparkle in her eyes Shamila, who will be leaving for the United States next week, said having Ariana was the best thing that had ever happened to her and did not wish to change that for anything.
"Yes, we may have a long journey ahead of us but I pray with God's grace, Ariana will continue to live life to the fullest and thrive," she added.
Heterotaxy Awareness Day is celebrated on May 4 annually in the United States. BERNAMA
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