A little boy wants to see the ocean, before he can no longer see
Tadan Foss is a boy made for the beach.
Like the ocean, his 4-year-old smile is big and wide, beautiful and bountiful.
Like surfer dudes, he likes his locks long and refuses haircuts.
He is like numerous children you have seen or known, but he is wondrously and woefully different.
The Belton, Mo., resident is being attacked by a rare, genetic disease that is incurable and fatal.
Tadan, however, is no chump. He has a champion spirit, albeit trapped in a deteriorating body, which refuses to surrender. Not now. Not today.
Instead, he and his family arrived Wednesday in Myrtle Beach as part of a journey allowing Tadan to experience life in high definition while facing difficulties most endure over a lifetime, not over four short years.
The brown-eyed boy with brown curly tendrils of hair that gently kiss his face when the wind blows has Vanishing White Matter Disease.
“He is a 4-year-old boy who has not given up,” said Todd Foss, his 45-year-old dad. “He’s an inspiration.”
Known as a type of leukodstrophy, the illness affects the cells of the brain. It impacts the myelin sheath, which is the fatty covering that surrounds and protects nerve cells. Damage to the sheath slows or interrupts messages between the brain and rest of the body.
This disruption leads to problems with movement, speaking, mental and physical development and vision.
Tadan will eventually lose his sight.
Already, he can’t walk and he can’t use his right side.
Pain is a companion, but you can’t tell from the Tadan that hung out on the beach Wednesday and Thursday.
“He is a spunky little fellow,” said Jean Pyle, a Hospice nurse who helps care for Tadan. “And that smile, his darling little smile. I love it.”
His trip to Myrtle Beach, officially called the 2011 Tadan Tour, was made possible by the Elves of Christmas Present. The anonymous Kansas City-area group organized the trip in about a week and half.
The group’s leader, who goes by Chief Elf, said Tadan is a special kid.
“When you first meet him, you will never forget him,” Chief Elf said. “He radiates. He is so cute, and he has such a great personality.”
The Grand Strand is one of several stops on a tour that has already included a stop at the Grand Ole Opry in Nashville and ends in Columbus, Ohio.
Tadan’s trip to the beach, however, was momentous because he had never before been to the beach.
Shortly after arriving at the Myrtle Beach Marriott Resort & Spa Grande Dunes, he saw the beach.
His mouth fell open, and his eyes sparkled.
Carisa Foss, his mom, picked him from his wheelchair and carried him to the shore.
She placed him on the sand. Right away, his feet and toes got busy playing in the sand.
Tadan, nicknamed “Little Surfer Dude” by his dad because of his hair, was simply ecstatic.
“Isn’t this awesome?” his dad asked.
“Yeah,” Tadan said.
Even when a strong wave knocked him over onto his left side, Tadan smiled and grinned until his mom rushed over and sat him straight up again.
“When he can’t see anymore, he will have these memories in his mind,” said Carisa, a 32-year-old photographer who stays at home fulltime to help care for Tadan.
“He will be able to see these things in his head.”
Todd Foss, a general manager at Chipotle in Oakland Park, Kan., said he and his family are committed to living each day with gusto.
“We don’t sweat the small things,” he said. “We cherish each moment. We get up early and go to bed late.”
The boat & the boy
On Thursday, Tadan and his family headed to Captain Dick’s Marina in Murrells Inlet where they boarded the Instigator.
The captain, Jamie Moore, and his first mate, David Passaly, took them out about a mile and half on the 40-foot charter boat.
While his mom held him, Tadan tried his hand at fishing.
King mackerel, flounder and other sorts of ocean dwellers were in the water, but they weren’t cooperating with Tadan.
He didn’t care, though.
Moore let him steer the Instigator while in his mom’s lap. Tadan navigated as if cruising in a pimped-out ride along Ocean Boulevard.
He looked from side to side and flashed his debonair smile before putting his full attention in the front of him.
Little Surfer Dude had turned into Cool Daddy.
Moments later, he was thrilled to help his mom and dad fish.
With his mom, he reeled in several empty lines before snagging a lizard fish.
Passaly asked if he wanted to touch it, and Tadan declined.
He was thrilled to help his dad catch a Spanish mackerel, but he chose not to touch that fish, either.
Little Surfer Dudes just don’t do that.
After about an hour out, Moore steered the Instigator back to the dock.
While his 11-year-old sister, Paige, and his mom fought off motion sickness, Tadan chilled in his dad’s lap and enjoyed the ride back.
That big smile of his appeared as his surfer hair whipped across his face.
The boy who lives
Death befriends all.
Todd and Carisa Foss know it longs to meet their son.
And they have tried to prepare as best they can.
When Tadan was born Dec. 29, 2006, they had no idea he would be diagnosed with the deadly disease in February 2010.
They know he lives with pain and anxiety.
“He’s got used to it because he thinks it is normal,” Todd Foss said.
His parents, both American Indians, have talked to him about leaving them behind.
When Tadan does leave this world behind, Todd Foss firmly believes his missions on Earth would have been accomplished.
In Myrtle Beach alone, he melted the heart of a waitress who told the Foss family because of Tadan she would never take her children for granted again.
The family will donate his skin tissue and vascular muscles in hopes it will help sick children Tadan leaves behind when that day comes.
Their hope is that day is far off.
They cry some days.
Tadan’s 9-year-old brother Dalton broke down recently.
For now, though, the tears are taking a back seat to laughter and living.
“He is such a strong boy,” Todd Foss said. “He is my Little Surfer Dude. He is my buddy. For a 4-year-old boy, he is a cool, freaking kid.”
Johanna D. Wilson, The Myrtle Beach Sun News