Vision problems never slow down Charlie Dolan

Look out world, here comes Charlie Dolan.

“Sister Fia,” said the tiny not-quite-3-year-old, in a tiny voice. He tapped the foot of his baby sister, cradled in Mommy Kristin’s arms. Then he was off to show more of his favorite things.

“My dump truck,” Charlie said, scooting it back and forth across the living room carpet. On to a tray of colored shapes. “That’s blue. ... red. ... yellow. ... That’s purple.” But dunking a little orange basketball through a Charlie-sized hoop was more fun. Again. And again. Off to the front window. “See the flowers.”

“As you can see, he’s changed a lot,” Kristin, 27, said of her son, who had been diagnosed with a rare eye disorder and glaucoma days after birth. “We knew he could see, but we never knew how much. Now he can tell us. And he never stops.”

The last time you saw Charlie was in an April 2015 News-Democrat story. Kristin was teaching Charlie new things and working once a month with a developmental specialist from the Delta Gamma Center for Children with Visual Impairments in St. Louis. Charlie’s dad, Air Force Capt. John Dolan, 28, was deployed thousands of miles away from home in Southeast Asia at the time.

But that didn’t stop John from running in the Delta Gamma Run for Sight 5K on the other side of the world while hundreds of others walked or ran in St. Louis last May. He also recruited others for Team Charlie to raise donations to help the center that had given Charlie and Kristin so much support.

“The response to the (News-Democrat) story that ran was amazing,” said John, who is enjoying being back home at Scott Air Force Base until he is deployed again in July. “Our goal was a hundred dollars. We raised about $1,800. Team Charlie was the third highest fundraiser.”

And Charlie?

“He’s such a rock star,” Kristin said of Charlie, who will be featured in an upcoming United Way campaign video. “People would recognize him when we were out walking in the neighborhood. And at Target. He loves the attention.”

The diagnosis

Shortly after Charlie was born on April 28, 2013, Kristin and John noticed his eyes were a little cloudy. Doctors and nurses didn’t seem concerned.

“On May 3, Charlie’s fifth day of life, our lives changed,” Kristin said. A pediatric ophthalmologist took one look at Charlie’s eyes and diagnosed him as having Peters Anomaly (a genetic defect that causes blurred vision and affects about 1 in 100,000 people). They also discovered glaucoma.

Glaucoma caused Charlie’s left cornea to rupture, and he had an emergency cornea transplant at 19 days old. Then came glaucoma shunt surgery at 4 weeks old. After that, things were going well until the Dolans moved from Hawaii to Scott when Charlie was three months old. Charlie’s eyes began to reject the cornea transplant. He had his second cornea transplant at St. Louis Children’s Hospital at 6 months.

That time, it took. His vision has stabilized at 20/250. Charlie still has to have eye drops several times a day, wear sunglasses and a hat to protect his eyes from sunlight, and get checkups under anesthesia every six months.

“Some day his cornea will age out and he’ll need a lens implant in eight to 10 years,” Kristin said. “But we don’t want to put him through anything unnecessarily now. He needs a chance to be a kid.”

Daddy’s home

While John was deployed, Kristin did the heavy lifting on the homefront. She had a good support group in grandparents who came to visit from Wisconsin, the Scott community and the Delta Gamma Center.

“She did an amazing job,” John said. “I couldn’t have done what she did.”

While John was away, they kept in touch on Skype. And his recorded voice in some of Charlie’s books always made Chrlie smile. He knew it was Daddy talking.

“Within two weeks of John coming home, Charlie’s language skills just exploded,” Kristin said. “It was like night and day. He went from babbling simple sounds to talking in complete sentences.”

“It was like a switch was turned on,” John said. “And he hasn’t stopped.”

“Now, he tells us everything he sees and wants,” Kristin said. “He is legally blind, but it’s reassuring to know that he can see more than we ever imagined we could. One day, a red truck drove by and he said ‘That’s a red truck.’ Whoa!”

When Charlie put on his little blue glasses, he said, “Now I see better.”

He still has to get inches away from a cell phone to watch a video and he stands a few inches from the TV screen to watch cartoons.

“He’s crazy about Curious George right now and Mickey Mouse,” Kristin said. “He acts out their roles with his toys.”

He was also crazy about playing in snow for the first time. “Oh, my gosh, yes. He’s good at making snow angels,” Kristin said.

Big Brother

Another big change for Charlie came Aug. 22 when Fiona was born.

At 9 months, Fiona weighs almost as much as Charlie, who is small for his age.

“Charlie is the perfect big brother,” Kristin said. “He watches out for her.”

He often tells his parents, “Baby sister needs to eat.” “Fia needs a toy.”

Charlie entertained Fiona by cutting plastic vegetables (magnets hold pieces together) with a wooden knife.

“What are you doing, Charlie?” Mommy asked.

“Making salad.” Fiona smiled a two-tooth smile and never took her eyes off Charlie.

“He’s really smart,” Kristin said. “One day, he looked up at the sky and told me ‘Clouds make rain.’ Where did that come from?”

“I want a yogurt smoothie,” Charlie said, running into the kitchen. And in the next breath, “Maybe later.”

“Sometimes he answers his own questions,” Kristin said.

Duty calls

John Dolan is scheduled to be deployed overseas again in July. This time, Kristin and the kids will be heading for their hometown of Hudson, Wis., for the duration.

“The kids can be close to their grandparents, who will love it. And they can help Kristin a lot,” John said.

When Charlie turns 3 today, he will age out of Delta Gamma Center’s early intervention program. But, John said, he will never forget how much the people at the center did for his family.

Not only is John running in 24th annual Run for Sight on Sunday in St. Louis to raise money as Team Charlie. While he is abroad, he has committed to ride 3,000 miles on a stationary bike, which equals the distance from coast to coast across the United States.

In true engineer form, he did the math in his head.

“I’ll ride 20 miles at a time for 150 days ... six days a week for 5 1/2 months.”

Why?

“Why not? If it helps other kids and families get the support that Delta Gamma gave us, it’s worth me doing it.”

That was enough talk for Charlie.

He latched on to Daddy’s hand. “Go outside to play.”

Kristin put on Charlie’s sunglasses, hat and moccasins first.

Then it was off to blow bubbles, fill a watering can and dump it out and pat the the plastic pink flamingo that lives in the backyard.

Charlie named her. “That’s Patty,” he said, blowing bubble in Patty’s direction.

“I don’t want him to think he can’t do something,” Kristin said, watching Charlie and John through the kitchen window. “I want him to do anything his peers are doing. Of course, he’ll always be clumsy at sports — he might not pick up a ball coming toward him.

“But with most things, he doesn’t let his vision problems slow him down at all. The other day, he counted to twenty.”

This story was originally published April 27, 2016 at 7:33 AM with the headline "Vision problems never slow down Charlie Dolan."