Boy with Down syndrome to be featured in national campaign

By Charmaine Smith-miles-mail, Associated Press | Posted - Sep. 3, 2015 at 1:01 p.m.



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WILLIAMSTON, S.C. (AP) — As soon as the crayons are in their plastic bag, Brinkley Holder turns the bag over and dumps onto the carpet again. He glances at his mother and giggles.

And, then, when he thinks his audience is paying attention to something else, he runs to his dad and tries to stand on his head, using his father's hand and legs as a balance. He never quite makes a full head stand. All the while, his father, Bryan, is holding onto him to keep him from falling.

When the attempt at a head stand is over, his father, Bryan, asks his son for a kiss. Brinkley runs around the living room, smiling. At first, he acts as if he didn't hear his dad's question.

But a minute later, Brinkley's climbing into his father's lap. Brinkley is a bit smaller than most 3-year-olds. He works to get into his lap. But once there, he places a kiss on his dad's cheek and then throws his arms around his dad's neck and gives him a hug.

"He's a typical 3-year-old," his mother, Crystal, said. "He's mischievous and he loves to entertain others."

On Sept. 19, Brinkley will get to do just that — entertain others. And this time, he will have a large audience.

He will be one of 450 people selected out of 2,000 to appear in a video that will be aired in Times Square in New York City. The video will kick off Down Syndrome Awareness Month in October and the National Buddy Walk effort. "This video will remind the world in a very big way about the contributions and milestones of people with Down syndrome," a statement from the National Down Syndrome Society.

After the video is shown, amid thousands of people gathered for event, Brinkley and his mother and other families affected by Down syndrome will be bussed over to Central Park in New York City so they can participate in the 21st Annual Flagship Buddy Walk.

"He loves attention and being around a lot of people," Bryan said. "He eats that up. He is camera ready all the time. So he will love New York City."

It will also be Brinkley's first plane ride that he has had since he was a baby.

All of it, for the Holders, is a major milestone for their youngest son.

One does not notice it now, but this 3-year-old boy — who loves to climb on shelves, dump out crayons and make a noise with anything from toys to picture frames — had to fight through his first year of life.

He was born when Crystal was only 34 weeks into her pregnancy, and he was born with heart condition. He was born Sept. 6, 2012, weighing three pounds and two ounces. He stayed in the Greenville Memorial Hospital's Pediatric Intensive Care Unit until Oct. 26.

On Dec. 2, of that same year, he was on his way back to a hospital.

This time, he was headed to the Medical University of South Carolina in Charleston. He was flown to the hospital so that he could go through his first heart surgery.

Now, two years later, Crystal reflects on that trip to Charleston. She said that when Brinkley was born, everything was intimidating, because there was so much to learn about how to care for their son. Several nurses, especially one named Charlotte, helped with easing those first fears.

But the trip to Charleston was a whole new fear — one that felt overwhelming at times.

"What was really scary was learning to deal with the heart issues he had," Crystal said, wiping tears from her eyes. "You can deal with a Down syndrome diagnosis. But you cannot live without your heart functioning properly. So that was scary."

Brinkley was born with a hole in between the two chambers of his heart and a narrow pulmonary artery. The surgery at the hospital in Charleston helped correct that. The Holder family stayed in Charleston for five weeks that time.

But he wasn't done in that visit.

Brinkley went back to Charleston the following February, when he was just 6 months old. This time, doctors were going to put a pacemaker in his heart. Crystal said he received his pacemaker on Valentine's Day.

After that, he was back in the hospital in Greenville because he was having trouble breathing. Twenty-six weeks of his first year, Brinkley was in the hospital.

Turns out, the Holders' youngest son was a fighter. There are no signs now of anything slowing him down. He follows around his older brother, 7-year-old Reese, as any toddling sibling would do. This month, he will start school, attending classes where Reese is also in school.

Both boys will go to Palmetto Elementary School, Crystal said.

"Reese is so good with his brother," Crystal said. "Being around Brinkley has taught him to be compassionate. He's already asked me if he can go check on his brother when they are in school together. The other day, Reese asked me, 'Do I get to hold his hand and walk him to class?'"

The Holders said they have also learned a lot from Brinkley.

Through Brinkley's diagnosis and his hospital stays, the Holders have witnessed how a community has come together to support them. When they were in the Greenville hospital, friends gave them gift cards to help them with buying meals.

And Family Connections, a charity that helps support families with children who have special needs, helped introduce the Holders to families who have dealt with some of the same questions and fears of raising a child with special needs.

Now, Crystal helps do the same for others. She raises money through t-shirt sales to pack care packages for families at the Greenville hospital who are the new parents to a child with Down syndrome or with heart issues.

But the biggest lesson they have learned is that having a child with Down syndrome is a blessing.

"The world looks at those with Down syndrome as the ones who are not typical," Bryan said. "But maybe it's the other way around. In Brinkley, and others with Down syndrome, there is an acceptance and unconditional love."

"Their pace with learning and growing is just a little different," Crystal added. "So we just adjust to his pace."

___

Information from: Anderson Independent-Mail, http://www.andersonsc.com

Copyright © The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Charmaine Smith-Miles-mail

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