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Wednesday, Mar 25, 2015

Family ready to face challenges of raising child with Down syndrome

Hernando Today Correspondent


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Timothy and Daniele Stokes have had challenges as parents. Yet when they speak of their 5-year-old son, Jesse Timothy Gunnar Stokes, there is little question they consider their parental roles a blessing.

Jesse has Down syndrome. Daniele declined to have an amniocentesis performed when an ultrasound during her pregnancy detected a possible abnormality. "It wouldn't have mattered," Daniele said. "We wouldn't have terminated the pregnancy anyway."

She progressed through what felt like a normal pregnancy, believing her baby would be born without complications. And when she held him for the first time, she was convinced he was fine.

A routine newborn screening indicated otherwise. Daniele called on a trusted physician, a neonatologist, to examine Jesse. The doctor determined Jesse had Down syndrome. "He laid down on the bed with me and held my hands while I cried," Daniele said.

Jesse is an energetic, dark-haired, brown-eyed, curious 5-year-old boy who enjoys jumping on playground equipment and chasing his 13-year-old brother, Maxx, and 10-year-old sister, Sydnee. He stops for a brief moment to make eye contact before darting off again.

Jesse displays some physical traits that are typical with Down syndrome. But like many children with complex genetic disorders, Jesse is unique. To his parents and his siblings, Jesse is a hero.

According to the United States Census for Disease Control, 6,000 infants are diagnosed with Down syndrome each year.

Many children with Down syndrome have distinctive facial appearances, including a flattened nasal bridge, small head, short neck, protruding tongue, slanting eyes and unusually shaped ears. But not all have the same features and some children show more distinctive characteristics than others.

Jesse's eyes, sparkling and full of curiosity, have the distinctive slanting with tiny flaps of skin in the corners, also typical of children with Down syndrome. The boy's father, Tim, recalled a dream he had when Daniele was pregnant with Jesse, before they knew their son had Down syndrome.

"The boy in my dream had slanted eyes," Tim said. He also dreamed the child's name was Jesse. The couple already had agreed to name their son Timothy Gunnar Stokes. But the dream had been so profound; they added Jesse to their son's name. And both prophecies in the dream were realized. Jesse Timothy Gunnar Stokes was born with the genetic disorder.

Other complications are attached to Down syndrome, like certain heart abnormalities, infectious diseases and sleep issues. Many children with Down syndrome also have low muscle tone, requiring occupational and physical therapies, and other adaptable devices.

The Stokes have had a tough haul. Their eldest child, Felicia, now 23, Maxx, 13, and Sydnee, 10, were typical pregnancies. Another child - a girl - had a rare brain disorder and died shortly after birth.

Jesse's Down syndrome diagnosis sent Daniele into periods of deep grieving for the daughter she lost and the future she wanted for her son that would never be.

And then she found an inner strength, supported by a husband.

Daniele remembered asking herself what she had done wrong when Jesse's Down diagnosis was confirmed. But self-pity lasted only long enough for Daniele to look into her newborn's eyes and see into his soul.

She has become his advocate, supported by her other children who would do anything to keep their brother happy and safe.

The Stokes had to adjust their parenting to meet the demands of a Down syndrome child. In so doing, and arming herself with knowledge, Daniele began a Down syndrome support group that helps educate new parents on what to expect as they raise their child.

While Jesse is in kindergarten with his same-aged peers, he is delayed in some cognitive skills and has some muscle-tone issues that require therapies. But he is thriving, affectionate, and a gift to his family.

"I don't like when kids pick on him," said Sydnee, who acknowledged living with a Down syndrome brother isn't always easy. But she takes the role of big sister seriously.

Maxx is a hero in Jesse's eyes. He, too, jumped in to be the advocate his brother needs to keep him happy and thriving in a world that is increasingly tolerant and accepting of those who are different.

Down syndrome doesn't define the youngest member of the Stokes family. Instead it puts the family in a position to help educate a community about a disorder that isn't so rare.

"I want people to ask me about Jesse," said Daniele, who wears a green and yellow tie-dyed rubber bracelet to support her son. "Up with Downs" it says, and encourages people to become educated about the genetic disorder.

As a maternity ward nurse at Bayfront Health Spring Hill, Daniele has counseled new parents whose children are born with Down syndrome.

And she is in the perfect position to bring light to what used to be a dark diagnosis. "Your child is going to be as successful as you want him to be," she said, "because you are the one who is pushing him."

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