Commentary

Wish helped boy with autism connect

An autograph from Tony Gonzalez upset a young Robbie Farabee. Not today.

Updated: August 20, 2013, 6:37 PM ET
By Cynthia Faulkner | ESPN.com

FarabeeCourtesy of Mattel Robbie Farabee, right, and his sisters Amie, left, and Beth sit in a life-sized Deora II Hot Wheel.

As a sixth grader, Robbie Farabee walked around the woman from the Make-A-Wish Foundation, intently inspecting her back.

Perplexed, Kim Hinkle asked what he was doing and he said: "I want to see your wings because you're my wish fairy."

Robbie is my great nephew. In 2007 when he was given his wish, it was both joyful and somewhat distressing for the family. We were excited that he would experience this great opportunity, yet somewhat sad that his cardiologist agreed Robbie met the qualifications.

In the end, though, it turned out to be more than a fabulous trip to meet the designers of Hot Wheels at Mattel. It helped turn him into a young man who realized there was a world beyond his own small community of Wood Heights, Mo., and that he could make a difference in it.

Those who knew Robbie as a small child cannot believe how far he's come, while those who know him now have a hard time believing life was once so difficult. In fact, he barely survived his first moments.


A Tiny Cry

The hopes for a healthy baby were short-lived for my niece Christiana and her new husband, Patrick Farabee. Christiana was only 5 years younger than me. We played Barbies together and dreamed that one day, like Disney's Cinderella, we would live happily ever after.

She was five months pregnant when she called me in tears. She'd gone in for a standard ultrasound and the doctors discovered several problems. The baby clearly had a major heart defect. He might have deformed limbs. She was determined to give him his best chance for survival.

At only 19, she spent months on bed rest. She gained 85 pounds in an effort to have the baby pack on as much weight as possible. Babies tend to lose weight after birth anyway, but doctors knew he would need major surgery to survive, which would cause him to lose more weight. That's if he lived that long. Hospital staff braced the young couple for their baby to never come home from the hospital.

"They originally said, he wouldn't be able to sustain his own breathing and heart rhythms once he was born," Christiana said.

Despite the grim forecast, he already had a name: Robert William Farabee, after both grandfathers. His parents decided not to put Robbie, as his mom already called him, on life support.

"We made the choice to hold him," Christiana recalled, "so that his last moments with us would be being held."

The C-section went as planned. The pediatric specialists at St. Luke's Hospital in Kansas City stood on the periphery. They were not expecting to be needed but were ready just in case. The couple received many sympathetic smiles that didn't expand to the givers' eyes. Hopes were low.

And then Robbie gave one tiny cry.

"The whole room exploded," Christiana said. "It was like fireworks."

[+] EnlargeRobbie NICU
Courtesy of Christiana Farabee Robbie Farabee only a few days after his birth with a chart of his heart defects attached to his bed.

Now people had a job to do. As they cleaned the baby up, Patrick followed and shouted back reports to his wife.

"Two legs, straight as arrows!

"10 toes!

"10 fingers!"

"He looks beautiful," Patrick repeated over and over. He was allowed to hold the baby and take him over to Christiana. Robbie wrapped his hand around her finger.

"I remember looking at him and that realization: 'I love you so much. I'd do it all again for this moment,'" she said.

"I mean everybody in the room was crying."

They stabilized Robbie overnight and the next day Patrick rode with his son to Children's Mercy Hospital. Mom had to get stronger before she could join. She managed to be released in time for Robbie's first open heart surgery at 3 days old.

His diagnosis was congenital heart defects – specifically ventricular and atrial septal defects and pulmonary valve atresia. Many children live with small holes in their hearts that eventually heal themselves. But in Robbie's case, the lower chambers of his heart had practically no separation.

The first surgery inserted a shunt and explored his defects. Six days later, he again underwent major surgery. This one was unplanned.

One lung had hyper inflated and the other deflated all while pushing his heart to the opposite side of his body. But, in what his mother terms "our miracle," when doctors opened him up, the deflated lung inflated and all was well again.

He came home from the hospital at 6 weeks old and weighed less than when he was born. But he was home.

The next few years included more surgeries and scares but Robbie pressed on.

He was 3 years old when the family was warned he might yet again need surgery as he entered his teen years and his heart grew. His diagnosis was changed from heart defects to heart disease because deterioration continued. But as time passed, the surgery wasn't required. 


Adjusting To Autism

The heart and lung defects weren't the only challenges Robbie would face.

For his first Christmas, the family all laughed as Robbie seemed to enjoy the sound of wrapping paper tearing more than looking at any new toys. But then again, he was only 6 months old. It was a symptom that I would later recall as a sign that from the very beginning, our boy had autism.

At the time, our family's only experience with autism was through the movie "Rain Man." In 1995, when Robbie was born, the autism rates were just beginning to climb to 1 in 500 children compared to 1 in 2,500 in 1985.

[+] EnlargeDoll
Cynthia Faulkner A tiny tube protrudes from a Buddy Doll so that Robbie Farabee won't be scared of his own tube after heart surgery.

His symptoms were severe. He used a book with icons to ask for simple things like drinks, toys or activities. Routine was extremely important. He wouldn't eat much and when he finally began to eat regularly, he wanted pizza for every meal. He had trouble making eye contact. Specialists said he would never understand imaginative play – something particularly difficult for his artistic and imaginative mother to hear.

After his final open-heart surgery, his blood flow increased so that we began to see improvement. After diligent work with his parents and therapists, he began talking and walking. Yet, he still dealt with the limitations of his condition.

Simple things that other kids would love caused him distress. Former Chiefs tight end Tony Gonzalez discovered this much to his dismay.

The Tony Gonzalez Foundation had provided dolls for Robbie's surgeries – one with a tiny chest tube – so that the child wouldn't be scared by his own appearance after his surgeries.

The foundation also supported a fantasy flight to the North Pole one year. The Farabees went to Kansas City International Airport and received tickets to the North Pole. They then boarded the plane for a short flight around Kansas City to view the special Christmas lights at The Plaza and then landed in another hangar, which was decorated like the North Pole. Tony Gonzalez was signing autographs for the kids, who had been given special commemorative T-shirts for the trip.

Robbie's dad was holding him and said to Christiana, "I want to get a picture with Tony Gonzalez." So they walked toward Gonzalez, who was in signing mode and automatically signed Robbie's shirt.

"No! Oh no! He ruined my shirt," Robbie loudly exclaimed. "He scribbled on it!"

[+] EnlargeTony Gonzalez
Courtesy of Christiana FarabeeFormer Chiefs tight end Tony Gonzalez attempts to give Robbie Farabee an autograph.

Gonzalez stopped writing, while Robbie began to try to rip off the "ruined" shirt. Poor Gonzalez began asking for a new shirt for the clearly distressed child, but they'd only made enough for each kid. No extras.

The rest of the day, Robbie told every new person he met about the incident.

"He told Santa that Tony Gonzalez scribbled on his shirt," his mom recalled with a chuckle.

"I'm not still mad," Robbie, now 18, clarifies. "He was one of my favorite players."

As a baby, Robbie's father tried to corrupt him with his own love of the Cowboys – dressing the child in Cowboys gear. But Robbie chose to go red instead. In fact, he wore more than one Tony Gonzalez jersey.

For Robbie's 18th birthday this July, his parents opened a time capsule they had buried for him. Inside, Robbie discovered other autographs that Chiefs players had given to him while a patient at Children's Mercy.

"See, I was born a Chiefs fan," Robbie observed. "I'll always be a Chiefs fan."


A Whole New World 

[+] EnlargeMattel
Courtesy of Mattel A ramp requiring safety goggles was only one of the fun things that Robbie tried out in his visit to Mattel.
Robbie couldn't play sports or really even participate much in gym class. His heart just couldn't work that hard. He enjoyed collecting Hot Wheels with his father. And maps will always be a favorite. One of his special talents is to remember routes like a personal GPS. If you're lost, you want Robbie as your navigator.

But as a child, like many kids with autism, it was hard for Robbie to imagine possibilities beyond his own neighborhood. The local representative for Make-A-Wish first asked "if he could go anywhere in the world, where would he like to go?"

Robbie responded: "Pizza Hut."

This would take a bit of work. They discussed some of his interests and Robbie began talking about his Hot Wheels collection. It was something he shared with his dad. A guy thing – especially after twin sisters came along when Robbie was 6.

His cars were what his parents had used to teach him colors, how to count and some math concepts.

"My favorite Hot Wheel at the time was the Deora II," Robbie said. "I realized that the Mattel company in California has a real-life Deora II."

And so that became his wish. Robbie, his sisters Amie and Beth, and his parents flew out to California, where they met the Hot Wheels designers.

[+] EnlargeRobbie and Hot Wheel
Courtesy of Christiana Farabee Nathan Proch designed a limited edition Hot Wheel just for Robbie with pizza as the theme. It's still proudly displayed in his room along with the framed schematics.

Mattel brought out every Hot Wheel that the company had turned into a life-sized car, and Robbie got to sit in them all.

"It was pretty awesome," Robbie recalled. "They gave me my own private car show. They showed me around the place."

He also fondly remembers donning goggles to race on a ramp and racing remote control cars as part of the tour. And the Mattel folks even took care of his sisters with special Barbies. And of course, they served his still favorite meal of pizza for lunch.

"When we get a request for a wish, our employees really go above and beyond to make it as special as possible," said Deborah Dicochea, manager of the Mattel Children's Foundation.

The most poignant gift, however, came from the Deora II's designer, Nathan Proch. Diagnosed with cancer, Proch was unable to attend Robbie's special day. But it was Proch who designed Robbie's own special-edition pizza delivery car (with flaming tomatoes on a green background – Robbie's favorite color). Proch wrote Robbie a letter thanking him for admiring his design work and sent along signed design schematics for the special-edition car.

Patrick learned from the other designers that Proch was quite touched that Robbie chose his car design for a wish. Some of the cars that Robbie received were selected from Proch's personal collection. They still reside in a special display case built for them by Christiana's father.  

Additionally, the Mattel people loaded up huge boxes of toys and shipped them back to Missouri for all three kids. But the true gift that Robbie received was so much more. You see, his story had made the local news.

"I thought it was really awesome," Robbie said of the publicity. "I was actually famous."

A young boy who had trouble making connections with others now had fans.

"That was my first time actually being in the newspapers. Many people were actually asking for autographs throughout the city and whatever," Robbie said.

After that, young people would come up to Robbie's mom and introduce themselves as one of Robbie's "fans." These fans looked out for him as he went through high school. And it was his fans, he explained to his mom, who inspired him to go out for student council as a freshman. He felt he owed it to them.

[+] EnlargeRobbie Dancing
Courtesy of Christiana FarabeeRobbie, dancing here in "Thoroughly Modern Millie," found a home on stage. He also participates in the Excelsior Springs, Mo., community theater.

When I asked him about it recently, a wiser and more polished young man with four years of student council service experience explained: "I had so much I wanted to share and so much I wanted to see happen."

Student council led him to try out for theater and eventually for parts in the community theater where every member of the Farabee clan – including Grandpa Dennis – has played a role.

"The community theater was like the best place I've ever gone to," Robbie said. "We have so much fun tradition. So many fun characters I played.

"And all sorts of things, throughout high school I was involved in a whole lot of things."

After Robbie's trip to California, the Make-A-Wish folks asked him again, if he had a chance in the future, what would he like to do? He said he'd like to go see the pyramids in Egypt.

"Before, he couldn't see past the front door, so it really just opened up the world for him," Christiana said.

As for his future, his cardiologist tears up with joy to see the once tiny baby who now towers over his father. Robbie will always deal with autism, but it doesn't stop him from wanting to help others.

[+] EnlargeChristiana and Robbie Farabee
Courtesy of Christiana FarabeeChristiana Farabee, left, and son Robbie prepare for their first day at school as "co-workers."

He spent part of his summer performing with Christiana in the community theater's production of "South Pacific." When school started in August, Robbie returned to Elkhorn Elementary School, which he once attended and where his mother now works, to help set up classrooms. He was so much help that the principal suggested he fill out official volunteer forms.

"The first thing we did when I got home was I signed those applications," Robbie said.

He assists in the cafeteria and with the children at recess. He's even adjusting to being called Mr. Farabee.

"The kids he gravitated to on the playground were ones who had extra challenges," Christiana said. "Robbie treats them like rock stars."

And you know how that works – when other children see a kid who is getting rock star treatment, well, they want to be a part of it.

At his high school graduation in May, his mother shared with me the speech Robbie gave at a special dinner for seniors. It had inspired her to write her own tribute to her son. In a quiet moment, she shared it with me:

"He didn't walk until 2, but now he loves to dance.

He didn't talk until 3½, but now he sings. He was never supposed to understand pretend play, but now his passion is acting.

He was never supposed to understand how to give or receive love, but now he greets everyone as a friend with a smile and a hug.

To quote Robbie in his senior speech, "I stand here before you to say: You can do the unexpected!"

Cynthia Faulkner is a senior editor at ESPN.com.

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