Aiden's Heart Foundation aims to help those in need

Family members say Aiden Matthew Phillips was a vibrant boy who lit up whatever room he was in and enjoyed every minute of life. Riding bikes, driving his toy Hummer and going to church were a few of his favorite ways to spend time.

"He was just so happy and sweet-loving," said Jessica Wright, Aiden's mom. "He was into everything and definitely ALL-boy!"

His name, meaning "a fiery gift from God," couldn't have been more fitting. Aiden's time on Earth, though, was much too short. He died on Sept. 28, 2009.

He was 4 years old.

Aiden's health was compromised by a condition known as Hypoplastic Left Heart Syndrome, which occurs when parts of the left side of the heart don't develop completely, leaving the organ's right side to work twice as hard. This results in the body's inability to circulate enough blood to the heart and lungs. Heart failure eventually occurs because of the right side's extra workload.

"We were fortunate enough to have known of his condition before he was born, so we knew a little of what to expect," said Matthew Phillips, Aiden's dad.

The congenital heart condition is more common in males and always requires multiple surgeries, beginning first with the Norwood operation (Stage I) a few days after birth to help build a new aorta and insert an artificial shunt to maintain blood flow to the lungs. The tiny patient is then sent home with a daily regime of medication and closely followed by a pediatric cardiologist.

The second surgery, or Stage II, usually takes place when the patient reaches 4 to 6 months of age and is called the Glenn shunt or Hemifontan procedure. This surgery connects half of the blue blood veins directly to the lung's blood vessels for oxygen flow. The Fontan Procedure (Stage III), which is usually (but not always) the last step, is generally carried out between 18 months and 3 years of age. It connects the remaining blue blood veins to the lung veins, enabling the right ventricle to serve as the only heart-pumping chamber, as stated by Google Health. A heart transplant is another option but infant heart donations are very hard to come by.

It was during the Fontan procedure, which Aiden had at Duke University in August 2009, that things rapidly started going downhill.

"Things shouldn't have turned out the way they did for Aiden. I mean, we knew he was sick, but there was a lot of mismanagement, mistakes and medication mix-ups made by medical staff along the way," said Phillips. "This made Jessica and I extremely angry about the whole situation, which made it even harder to deal with his death."

Needing to find a way to address anger and grief after Aiden's passing, Phillips came up with an idea to start Aiden's Heart, a nonprofit foundation in honor of his son.

Western North Carolina is saturated with children suffering from this same heart defect, so the couple said they knew there were hurting families out there just like them. There aren't many support groups in this area. Phillips and Wright said there is an extreme financial burden with this, so they want to help these families any way they can.

The couple told of an outpouring of support and love they received from local churches, schools, former employers and even the funeral home they used for Aiden's service and burial.

They also stated that Aiden's Heart is not just for families with children suffering from Hypoplastic Left Heart but for any family in need.

"Our main focus is in McDowell with the hospital, local schools and families, but we will go wherever the need takes us," said Phillips.

Phillips spent time with the local Meals that Heal program through Clinchfield United Methodist Church, and saw firsthand the number of people in the community who need assistance.

Over Christmas, Aiden's Heart helped a family whose 8-year-old was suffering from Hypoplastic Left Heart, by giving them presents, clothing and food. The organization also supplied several food baskets to McDowell County.

Aiden's Heart Foundation has an office located in Shoppes on the Five, Suite 1, at 931 N. Main St.

They will take money, food and clothing donations during business hours, which are currently 9 a.m. to 4 p.m. Monday through Thursday.

Aiden's Heart logo T-shirts are being sold to offset the cost of building rent and can be purchased for $15.

For more information or to make a donation, call 442-3798. You can also visit the foundation's Web site by clicking the link at the top of this story.

"Aiden touched so many lives," said Wright. "I think this organization will also help keep his memory alive. 'I love you with all my heart,' he would say all the time. He was so, so special to us and everyone who knew him."