Epilogue

Hayden Pheif 5.15.2000 - 8.6.24

Hayden Pheif was born on May 15, 2000. In September 2002, he was diagnosed with an ultra rare genetic condition called Fibrodysplasia Ossificans Progressiva, or FOP. He was one of 900 people in the world who had it. FOP causes bone to grow where it shouldn’t so Hayden had to be very careful not to fall or get injured as that would trigger the bone to grow.  He never wanted this condition to define him and he tried to live his life as full as possible.  He played in Little League, he was on the soccer team, he skied and loved to play with friends.   

In March of 2011, Hayden got pneumonia and ended up in the PICU for 4-1/2 months. He came home with a trach and on a ventilator. He still never let FOP define him. Hayden loved sports and enjoyed going to watch his friends play soccer or baseball.  He also was a big Giants and Warriors fan.  He loved going to games and even went to Giants spring training last April.  If you needed sports stats, Hayden was the guy to go to. He knew it all. 

Hayden was an avid gamer. He went twice up to Seattle to watch The International (DODA). He was an amazing multitasker. Gaming on one screen, homework on another, a Giants game on the TV, and Reddit or YouTube on another screen.

Hayden always had a love of art. His grandfather was an architect, Don Olsen of Sausalito, and his father is an engineer, so it must have been genetic. He started taking private art lessons in 2017. And his skill of drawing was honed weekly starting with charcoal, then watercolor and finally oils. 

As an avid movie fan, he watched 1,857 movies — yes, he kept track — he initially thought about being an artist to design for green screen backgrounds in movies.  However, he finally found his calling in architecture and decided he wanted to go to Berkeley. This past year he had at Berkeley was his most independent. His assistants were never allowed in his classes with him and weren’t allowed in crits either. He did as much as possible on his own. He was very excited to go to the launch party for the Student AIA Trace magazine and made his dad wait in the car for him for 3 hours.

Most of all, Hayden loved hanging out with his friends, whether watching sports on TV or grabbing a beer in the city.

Hayden passed away on August 6, 2024 from complications of pneumonia and sepsis.  His entire family was by his side.

You can donate in Hayden's memory at www.ifopa.org/hayden. Your generosity will ensure that his legacy to support research, patient support and family outreach will continue for those that remain.

Hayden leaves behind his mom, Megan, his dad, John, his stepmom, Jen, his younger sister, Elsa, and his dog, Bailey.

Hayden at Elsa's High School graduation.

Hayden in 1st Grade Art Class.

Hayden and Elsa visiting their grandmother in July 2024.