ALBUQUERQUE, N.M. (KRQE) – Nearly 50% of children born with Down syndrome are in urgent need of life-saving surgery. However, many parents aren’t aware of the risk, and that surgery is expensive.
At the beginning of Shianne’s life, it was scary. “I felt like I was holding a glass doll because she seemed so fragile with her medical conditions,” her mother Melanie Sanchez said. “I worried. Am I going to be able to take my daughter home? Is she going to be able to see the nursery that I have waiting for her?”
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The now 12-year-old was born with a condition that 50% of children with Down syndrome have, a hole in her heart. One that she would end up needing open-heart surgery to repair in hopes of a long life. ” I really had to trust God that morning. It was 5 a.m., her surgery, and I remember her sitting on the bed in her scrubs and smiling and laughing and waiving,” Sanchez said.
Shianne’s surgery, albeit long, was successful. “I can’t imagine going back in time and receiving that news and knowing that your child can’t have this medical procedure done because of financial reasons or just availability,” Sanchez said.
That is a problem, thousands of parents all across the world do face. In developing countries like Uganda and the Philippines, the majority of people see having a child with Down syndrome as something to be embarrassed about.
The stigma makes these children a low priority in the medical world, making an already expensive and specialized heart surgery even harder to get. “They need to be fixed, so they can live an awesome life, just like me,” said Tim Harris of Albuquerque’s Tim’s Place.
Tim Harris, the first business owner with Down syndrome in Albuquerque, just partnered with Hearts of Joy, an organization that pays for heart surgeries. “My restaurant served up more than just food, I got famous for my hugs,” Harris said.
Harris is using his famous hugs to raise money and awareness. “We’re teaming up for the Hug for Hearts Challenge, one hug at a time,” Harris said.
Hearts of Joy Founder Lauren Costabile says the lighthearted challenge could go a long way. “We’re trying to break stigmas, heal hearts and change communities,” Costabile said.
It could help a lot of kids group up to live happy lives, just like Shianne. “I just get to experience so many miracles by watching my daughter and the journey that we’re on. It’s been a great adventure,” Sanchez said.
Hearts of Joy has paid for 37 children to get that life-saving surgery so far. The average cost of the procedure, and travel to a providing, hospital, is $10,000.
To participate in the challenge, post a video hugging someone you love and upload it to social media with the hashtag #Hug4Hearts and follow and tag @heartsofjoyinternational and @timsbigheart. If you would like to donate to Hug4Hearts, visit their website for more information.