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Big Dreams, Little Steps

Dinner’s over and it’s playtime at the Paul and Jamie Myklebust home in Dilworth, Minn. Energetic and laughing, little Tylan makes a beeline for his toys. He tries one after the next, spreading his joy -- and toys -- throughout the living room.

But it’s the entertainment center with its deep, dark shelves that catches his eye. Tylan can’t talk, but his face says it all: What’s in there? Will it be fun?

He crawls over for a closer look, rises up on wobbly legs and grabs his mom for balance. He reaches into a shelf, then turns and grins at his dad.

Welcome to the happy, busy life of Tylan -- an 18-month-old who faces daunting disabilities. But thanks to devoted parents, skilled professionals and Sanford Children’s outpatient pediatric therapy, he’s made remarkable progress.

Tylan adds something, too: “He’s a hard worker who never gives up,” says Jamie, a third-grade teacher.

A laundry-room moment

Jamie will never forget that phone call in September 2010. Three-week old Tylan was napping and she was doing laundry when the expected call came from Sanford medical geneticist Dr. Pamela McGrann. The results from the genetic tests were in.

The family had come to know and trust Dr. McGrann, appreciating her years of expertise and experience. She became involved when Tylan was a newborn who showed some atypical physical features. Dr. McGrann spent time getting to know Tylan, assessing his condition, analyzing tests and educating Paul and Jamie.

The genetic tests confirmed what Dr. McGrann and the family expected: Rubinstein-Taybi Syndrome -- a rare genetic condition in which the tip of chromosome 16 is missing. Physical and mental challenges from RTS can range from mild to severe.

"After that call, I cried a huge amount of tears. It was the unknowns that got to me -- big things like what kind of quality of life will Tylan have? Will he ever walk or talk? But little things, too, like will he ever have sleepovers? Or drive a car? Paul gave me a really big hug,” recalls Jamie. “From then on we realized no looking back, we need to move forward.”

Support for parents, help for Tylan

Moving forward meant gaining knowledge and more. Because RTS is rare -- 1 in 125,000 births -- the chances of connecting with people locally are remote. Jamie found an online RTS community, enabling her to communicate with other parents around the world. In addition the whole family attends a yearly RTS gathering at Wisconsin Dells.

For Tylan, the help was closer, including:

    Frequent checkups and ongoing care with Sanford Children’s pediatrician Dr. Brenda Thurlow. “She treats him like she’d treat her own children,” says Jamie.
    Specialty pediatric care at Sanford and in Minneapolis to address eye abnormalities, hearing loss, a heart condition and more.
    Early childhood services through Moorhead School District -- an important developmental boost.

The pediatric therapy difference

When Tylan turned 1 year old, another avenue of help entered the picture.

“Dr. Thurlow said let’s not replace any of the great services he’s already receiving, but let’s add to them,” recalls Jamie. “He now gets twice-a-week speech and physical therapy at Sanford Children’s. It’s been tremendous!”

With expert help from pediatric physical therapist Lauren Emmel, Tylan has learned to crawl -- a skill easily picked up by most children. Tylan needed to be taught step-by-step.

“It took weeks and weeks and weeks, but today he’s crawling. We didn’t know if he’d ever be able to. With RTS, we take nothing for granted, not even seemingly simple things,” says Jamie. “Lauren makes the hard work of therapy fun. To Tylan it’s play and he absolutely loves it. All the therapists have really connected with him.”

Speech therapists Lindsay Wickham and Jaime Johnson utilize the same “purposeful play” approach in teaching Tylan how to communicate. He’s now able to sign several messages. He recently mastered Patty Cake and can now do it on his own.

“He was so excited! His face lit up and he had a great big belly laugh,” says Jamie. “With Tylan, we have so many of those moments. In fact most mornings he wakes up laughing.”

So many possibilities

Jamie still doesn’t have all the answers to her early questions, but at least she knows Tylan has a good quality of life. And she know he’s a determined little boy with a track record of success.

Says Jamie: “We know it takes Tylan a little longer and it’s going to be at his pace, but look at all the things he can do and all the things he’s learned!”

Adds Paul: “I don’t think I fully understood how therapists could help him, but now I do. It’s amazing what they’ve done.”

And Tylan? He grins when his dad kisses his cheek. He laughs when his mom tickles his tummy.

“If you dream it, you can do it,” goes the saying. And with Tylan, all those great big dreams start with little tiny steps.

Posted Date: April 2012