ALBUQUERQUE, NM (KRQE) – Nearly 50% of children born with Down syndrome are in dire need of life-saving surgery. However, many parents are unaware of the risk and the operation is expensive.
The beginning of Shianne’s life was scary. “I felt like I was holding a glass doll because it seemed so fragile with its illnesses,” said her mother Melanie Sanchez. “I was worried. Can I take my daughter home? Will she be able to see the nursery where I’m waiting for her?”
The now 12-year-old was born with a disease that 50% of children with Down syndrome have – a hole in the heart. One that she had to have open heart surgery in hopes of a long life. “I really had to trust God that morning. It was 5am, her surgery, and I remember her sitting on the bed in her smock and smiling and laughing and giving up, “Sanchez said.
Shianne’s operation was successful, albeit a long one. “I can’t imagine going back in time and receiving this message and knowing that your child cannot have this medical procedure done for financial reasons or just because of availability,” said Sanchez.
This is a problem that thousands of parents around the world face. In developing countries like Uganda and the Philippines, the majority of people are embarrassed to have a child with Down syndrome.
The stigma makes these children a low priority in the medical world, making it even more difficult to get an already expensive and specialized heart surgery. “They need to be fixed so they can have a great life, just like me,” said Tim Harris of Tim’s Place in Albuquerque.
Tim Harris, the first Down Syndrome business owner in Albuquerque, has just teamed up with Hearts of Joy, an organization that pays for heart surgeries. “My restaurant served more than just food, I became famous for my hugs,” said Harris.
Harris uses his famous hugs to raise money and get attention. “We’re teaming up for the Hug for Hearts Challenge, hug at a time,” said Harris.
Hearts of Joy founder Lauren Costabile says the light-hearted challenge could go a long way. “We’re trying to break stigma, heal hearts, and transform communities,” said Costabile.
It could help many children live happy lives, just like Shianne. “I experience so many miracles when I watch my daughter and the journey we are on. It was a great adventure, ”said Sanchez.
Hearts of Joy has so far paid 37 children for this life-saving operation. The average cost of the procedure and travel to a providing hospital is $ 10,000. If you would like to donate to Hug for Hearts, visit their website for more information.
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