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'Heart Walk' boy is all smiles

IT'S A GREAT DAY TO WALK FOR HEALTHY HEARTS. The Detroit Lakes Heart Walk is always well attended and will be held 9 a.m. to noon May 14 at the Detroit Lakes Middle School. There will be booths, music, games, food and a silent auction. Volunteers are needed. Call Lori at 218-841-5168 to volunteer.1 / 2
Will Johnson, nearly 2 years old, is the star of the show for this year's local Heart Walk. The Frazee boy is with parents Matt and Josie.2 / 2

Watching 21-month-old Will Johnson run, play, tumble and give hugs, there is no indication of the medical ups and downs he's endured since birth.

Having gone through two heart surgeries before his first birthday, little Will has been chosen to be the spokesperson for this year's Lakes Area American Heart Walk. And although the walk isn't until May 14, Team William is getting the word out early, raising money for the American Heart Association.

"It's nice to put a face to the Heart Walk," Will's dad, Matt, said.

As with all babies, Will's story starts the day he was born. He just hit a few bumps along the way.

When Will was born, Matt and Josie noticed something was wrong with their newborn. Although they were told he was fine, they pushed to know why their baby's limbs were turning an ash color when he cried.

A nurse detected a heart murmur and the next day noticed the ash color as well and fought for the Johnsons to take their son to a Fargo hospital. It was during an echocardiogram in Fargo that doctors said Will would need surgery, and he was flown to the University of Minnesota Children's Hospital.

He was diagnosed with Tetrology of Fallot and Double Outlet Right Ventricle.

At 6 days of age, Will underwent his first open heart surgery.

A third echocardiogram also found that Will suffered from a Sinus of Valsalva aneurysm. Not only is it a rare condition to begin with, it's never been seen before paired with Tetralogy of Fallot.

During his first surgery, doctors placed a shunt in from his aorta to the pulmonary artery to get oxygen flowing from his lungs to his heart.

The Johnsons were then told that their son would have to have another surgery between the age of 3 and 6 months.

"He surprised them all and had it at 11 months," Josie said.

The second surgery repaired the remaining heart defects, except the missing valve on his left pulmonary artery. He'll eventually have another surgery to have that valve put in, but that depends on when his body tires from the back flow of blood.

His trips to the doctor are calmer now. It's "nice to hear we weren't a priority," Matt said of the emergency surgeries Will had to have in the past. Now it's more of a process of wait and see how he does.

"This is all new territory for us," Josie said.

With the ongoing advances in medical technology, there may be more options available by the time Will needs a valve put in.

That's just one of the reasons the Johnsons want to help raise money for the American Heart Association.

Another reason they want to get involved is just getting the word out for parents to be strong advocates when it comes to their baby's health.

"At least get parents asking questions," Matt said.

Josie added that they want parents to listen to their gut and challenge what's being done when their child's health is at stake.

"You really have to be an advocate for your health," Matt said.

A bill has been introduced, and the Johnsons are hoping it passes, for mandatory congenital heart defect screening in babies.

"That's kind of our main thing," Matt said.

According to the American Heart Association, 3,531 people in the United States died from congenital cardiovascular defects in 2005.

Infant (under age 1) death rates are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants.

Good news, though, is that from 1996 to 2006, death rates for congenital cardiovascular defects declined 33.3 percent, while the actual number of deaths declined 26.7 percent.

Throughout the process, the Johnsons have been scrapbooking and videotaping what Will has gone through to show him when he's older. And it doesn't seem like anyone can convince Will at this age that anything was ever wrong with his health.

He's not on any medications, and he climbs, likes showing off his scars and plays with the family dog like any other kid who is almost 2 years old.

"I gave birth to my hero," his mom said.

The Heart Walk is May 14 from 9 a.m. to noon at the Detroit Lakes Middle School.