ALBUQUERQUE, NM (KRQE) – Almost 50% of children born with Down syndrome are in urgent need of life-saving surgery. However, many parents are unaware of the risk and this surgery is expensive.
The start of Shianne’s life was scary. “I felt like I was holding a glass doll because she seemed so fragile with her health issues,” her mother Melanie Sanchez said. “I worried. Will I be able to take my daughter home? Will she be able to see the nursery that I expect?
The 12-year-old girl was born with a disease that 50% of children with Down’s syndrome have – a hole in the heart. One that she would eventually need open heart surgery to fix in the hope of a long life. “I really had to trust God that morning. It was 5 am, her operation, and I remember she was sitting on the bed in her scrubs and smiling, laughing and giving up, ”Sanchez said.
Shianne’s surgery, although long, was a success. “I can’t imagine going back in time and receiving this news and knowing that your child cannot have this medical procedure for financial reasons or just availability,” Sanchez said.
It is a problem that thousands of parents around the world are facing. In developing countries like Uganda and the Philippines, the majority of people consider having a child with Down’s syndrome to be something to be embarrassed about.
The stigma makes these children a low priority in the medical world, making it even more difficult to get already expensive and specialized heart surgery. “They need to be fixed, so they can live great lives, just like me,” said Tim Harris of Tim’s Place Albuquerque.
Tim Harris, the first business owner with Down syndrome in Albuquerque, has just teamed up with Hearts of Joy, an organization that pays for heart surgeries. “My restaurant was more than food, I became famous for my hugs,” Harris said.
Harris uses his famous hugs to raise funds and raise awareness. “We’re teaming up for the Hug for Hearts challenge, one hug at a time,” said Harris.
Hearts of Joy founder Lauren Costabile says the light challenge could go a long way. “We are trying to break the stigma, heal hearts and change communities,” said Costabile.
It could help a lot of kids come together to live happy lives, just like Shianne. “I have just experienced so many miracles watching my daughter and the journey we are on. It was a great adventure, ”said Sanchez.
Hearts of Joy has so far paid for 37 children to undergo this life-saving surgery. The average cost of the procedure and the trip to a provider hospital is $ 10,000. If you would like to donate to Hug for Hearts, visit their website for more information.