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Parents of Lombard student seek relief for their son from gastrointestinal issues

Published: Friday, Feb. 22, 2013 9:00 a.m. CDT • Updated: Tuesday, July 29, 2014 9:54 p.m. CDT
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Erica Benson–ebenson@shawmedia.com Sebastian (Sebby) Adamczyk of Villa Park plays with his family (left-right) Katerina, Amalie and Matthew inside his home Friday Feb. 15 2013. Sebby was diagnosed with Downs syndrome at birth and has had multiple stomach surgeries as well as heart surgery.

VILLA PARK — Sebastian Adamczyk loves his iPad.

"He's crazy about that machine," said his mother Katerina Adamczyk.

He liked the noise, the colors, the sounds, and for a 5-year old who doesn't have the worlds to tell the world what he's feeling, the iPad gives him a voice, his mom said.

"I think he likes it because it's something he can control," she said.

Sebby, as he's fondly called by his parents, family, friends and teachers, is an active and well-tempered kindergartner who's been battling significant health issues his entire life.

He was diagnosed with Downs syndrome at birth, along with a plethora of other health issues, confirming predictions the doctors made from as early as 28 weeks into his mother's pregnancy. He stopped growing at 28 weeks and was delivered at 34 weeks, weighing in at a mere 2 1/2 pounds, but all his parents saw was a beautiful baby boy.

"He was here and he was just perfect to us," Katerina said.

The first few years of Sebby's life were a struggle. He had open heart surgery at 5 months old to repair two holes in his heart, and had a second surgery when he was 18 months old to tie the opening of his stomach and prevent him from vomiting.

But, the main issues Sebby and his parents have battled against have been problems with his gastrointestinal tract. Doctors aren't quite sure what causes the issues, but he struggles to take and keep food in his stomach.

Today's he's fed through a G-tube that puts a nutrient-rich formula directly into his stomach, bypassing the mouth and esophagus. The surgery he had as a baby is supposed to prevent him from throwing up the formula once it's in his stomach, but it doesn't always work.

His parents feed him every two hours and there's a laundry list of special diets and feeding treatments they've tried. Some have been moderately successful, but nothing's stuck permanently.

Today he's in feeding therapy at Easter Seals, but it's a very slow process.

"It seems like as soon as we have a plan and nail something down, he starts again," said his father, Matthew.

Like any parents, Matthew and Katerina hope for Sebby to grow up and learn to be independent, but for the short-term, they just want to find some relief, something that will make his feedings easier.

He started full-day kindergarten this year at Westmore School in Lombard, where he spends half the day in a multi-needs room and half the day in a mainstream kindergarten classroom. He's doing well.

"From all reports, he seems to like it," Matthew said. "He rides the bus, he likes the bus, all his aides and teachers love him."

He uses sign language to communicate with his parents and teachers, and it was through his iPad that they learned how smart he was. Like any other kindergartner, he knows his shapes, his colors, his letters and his numbers, his mom said.

Despite the lingering stomach issues, he's a happy, pleasant little boy and his parents are remain optimistic that things will improve.

He's the oldest in his family, with a 4-year old brother, a 20-month old sister and a baby brother expected in just a few weeks. His younger siblings do a good job playing with him, bringing him his favorite toys and paying attention to what he's doing, said Katerina.

Some of his favorite toys are cause and effect ones - those that will move, light up or make noise at the push of a button. He also loves music. His favorite is Andrea Bocelli.

"Something about music calms him down," Katerina said.

She said she and Matthew are very proud of Sebby and the accomplishments he's made so far. A year ago he couldn't walk and didn't know how to go down stairs. His growth is slow and he's small for his size, even compared to his Downs syndrome peers, but through it all Katerina and Matthew are proud of their son and looking forward to seeing all that he achieves in the future.

"He's the most patient, sweet child that we've ever met," Matthew said. "It's just not fair to him. If all kids could be as well-tempered as him, without the medical issues, it would be wonderful."

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