Old Mill Student Gets Big Boost from a Giant

A visit to Hayden Pheif's hospital room is like walking into a land of giants, both literally and figuratively.

Pheif, an 11-year-old fifth grader at , is in the pediatric intensive care unit at UCSF Medical Center, connected to a ventilator and myriad monitors as he battles respiratory problems exacerbated by a rare bone disease he was diagnosed with in 2002.

But while your attention is immediately drawn to Pheif’s brave fight, you realize that his attention is on the giants in his room - huge cardboard cutouts of his two favorite sports stars.

One of them, 23-year-old soccer dynamo Lionel Messi, is a giant in his sport, hoping to add to his astounding 52 goals in 50 matches as he leads his team, Barcelona, into this Saturday’s final of the Champions League, the world’s most prestigious club tournament, against Manchester United at Wembley Stadium in London.

The other is an actual Giant – San Francisco Giants catcher Buster Posey, Pheif’s favorite player and the man who made his 11th birthday on May 15 incredibly special, despite the circumstances.

Hayden’s mom, Megan Pheif, keeps up a blog where she updates family and friends about his condition. She wrote on it a few weeks ago that Posey was his favorite player. Not long after she posted the entry, the Giants’ community relations team, among other departments, received an avalanche of phone calls and emails from the Pheifs’ family and friends from Mill Valley and beyond.

“I have never seen anything like that before,” said Bobby Baksa, the Giants’ player and community relations assistant. “It was more than I’d ever seen before. While it is very different than the Brian Stow situation, I would say it was similar in terms of the response we received and the support the community showed for him.”

Baksa knew that the Giants would be on the road on Hayden’s birthday, so he arranged to have Posey record a video in Hayden’s honor.

"I just wanted to let you know that I can't be there with you but wanted to tell you how awesome it is that you are such a big Giants fan,” Posey said in the video. “It’s people like you who make our jobs fun. If we didn't have devoted fans like you there wouldn't be any reason to play this game. I know you have a birthday coming up this Sunday, and I'm excited for you and wanted to let you know that we will be playing the game for you. "

Although he is currently unable to speak because he’s on the ventilator, the focused glow of Hayden’s eyes as he watched Posey's video told the whole story of how much the video meant to him.

The video arrived about 11 months after Hayden was able to meet both Pablo Sandoval and Barry Zito at a Giants game.

His birthday celebration also featured a slew of visits and gifts from friends and family, including a Happy Birthday sign created by his fellow fifth graders in Marina Gamel’s class. The school and fellow parents have also arranged to have meals delivered to the Pheifs through Lotsa Helping Hands.

“It’s just been amazing,” Megan Pheif said of the response from the Mill Valley community and the Giants.

That support has coming long before this hospital visit, which began in early March when Hayden got pneumonia and the flu and was taken to Marin General Hospital. The illness was complicated by the fact that Hayden has a rare bone disease called F.O.P (Fibrodysoplasia Ossificans Progressiva), which he was diagnosed with in 2002. There are only approximately 700 known cases of the disease in the world, and barely a hundred in the U.S.

The disease transforms muscle and tendons and tissue into bone, significantly limiting the person’s range of motion over time.

The Pheifs connected with the University of Pennsylvania’s Dr. Frederick Kaplan, considered the world’s biggest expert on the disease. Over the past eight years, the family has raised nearly $1 million through events and silent auctions for research into F.O.P in conjunction with the International F.O.P. Association. A drug therapy that could potentially treat the symptoms of F.O.P is in the midst of clinical trials.

“He’s battling a disease that is so rare, which makes it very difficult,” Baksa said. “But to see the support that he has gotten is very special. There are a lot of people out there looking out for him and his family.”

Hayden Pheif is expected to receive a tracheotomy on Wednesday, a procedure that could eventually allow him to come home, Megan Pheif said.

“We’re holding out hope,” she said.

To follow Hayden Pheif's battled against F.O.P., read Megan Pheif's blog, Hayden's Hope.