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Benefit May 18 for 2-year-old boy with heart disease

May 6, 2014
Cayden

By Susan Johnson
Copy Editor

Cayden Ware is an adorable, lively 2-year-old who is the joy of his family. But he has a big problem — he was born with a rare congenital heart disease, and the treatments are very expensive. Cayden’s family and friends are holding a benefit in hopes the community will come out to support the needs of this very special child.

Cayden’s parents, Tiffany Hughes and Anthony Ware, know what it is to make sacrifices for someone they love. Even before he was born, they were informed they had a hard decision to make — and they chose life.

The benefit will be from 11 a.m. to 3 p.m., Sunday, May 18, at Jax Pub, 4160 N. Perryville Road, Loves Park, Ill. It includes music, pizza, raffles, a silent auction and a bags tournament. Cost for the tournament is $25 per team. The proceeds of the benefit will be donated to Cayden and his family, and a percentage will be donated to the Ronald McDonald House and the Hand in Hand Foundation in Cayden’s name.

Tiffany Hughes, Cayden’s mother, spoke with The Rock River Times and told how her son’s illness began.

It was actually diagnosed when I was 20 weeks pregnant,” she said. “I had an ultrasound, and they said there was something wrong with his heart. I had a midwife, and they sent me to Rockford Memorial Hospital to Maternal Fetal Medicine. They ran a series of tests for all the chromosomes, did blood work and had me speak to a genetic counselor, who told me that my son would be a vegetable. I had two days [to decide] … they wanted me to abort him, and I said, ‘Absolutely not!’ I told my midwife, they are not helping me. They say there is nothing they can do for my son. And they referred me to Advocate Hope Children’s Hospital in Oak Lawn, Ill. That’s where I met Dr. Cuneo. That’s when they told me they would be taking over my care. “

Dr. Bettina Cuneo is a highly accredited pediatric cardiologist, internationally known for her work.

She [Dr. Cuneo] told me that they thought it was only one thing, and he [Cayden] would need maybe about three surgeries in his whole life. But that’s not true,” said his mother. “When he came out, they were able to do echoes on his heart. They found that his heart problem is more complicated than they thought. They have never seen any human anatomy the way Cayden is. … Another interesting fact is when we stay in Oak Lawn at the Ronald McDonald House. I was actually the second pregnant person to stay there, and I stayed there for an entire month, dilated to 4 before he [Cayden] was born. I got helicoptered out there, and I had to stay until the birth.

Cayden has had three open-heart surgeries before he turned 1, and he will continue to have open-heart surgeries for the rest of his life,” she said. “There will be no cure for his heart disease. He is a typical 2-year-old boy. He is very talkative and happy.”

She told us about one of the other beneficiaries to be helped.

Hand in Hand Foundation is a foundation that I discovered through Advocate Hope Children’s Hospital,” said Tiffany. “It’s really in conjunction with Advocate; because they are so helpful to us, I decided it’s time to give back to them. We’ve had over 30 stays at the Ronald McDonald House. They all know us by first names. It’s like our second family. It’s good and bad at the same time. Every time we go to the hospital, everyone knows us.”

If you have any questions or would like to donate a raffle item or sign up for the bag tournament, contact Korissa Steger at (815) 742-1231 or korissamaesteger@gmail.com.

If you will not be able to attend and would like to make a donation, visit: www.gofundme.com/85cm2w.

From the May 7-13, 2014,issue

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