Philip Baker was ecstatic, perhaps more so than the average guy, his mother, Chris, said. The Bayvillite was turning 50 on Jan. 17, a milestone for someone with Lesch-Nyhan syndrome. The rare disorder, which only affects men, causes neurological and behavioral abnormalities and the overproduction of uric acid in the body. Years ago, doctors told Chris and her husband, Philip W. Baker, that their son would die before he reached age 12. No one ever thought Philip would live to see 50.
He has always been cognitively normal, but the disease causes him to harm himself and say inappropriate words, much like someone with Tourette’s syndrome.
Regardless, Philip, who, according to his mother, is one of the oldest men with Lesch-Nyhan syndrome, is popular in Bayville. That was evidenced by the 100 or so vehicles that drove by to wish him a happy birthday on Jan. 16 at Centre Island Beach.
Typically, Chris invites 15 to 20 people to her home to celebrate Philip’s birthday. His milestone birthdays have always been celebrated at the Bayville Firehouse. His father, who died in 2006, was an ex-chief from 1981 to 1982 and the president of the Bayville Fire Department. Philip is an honorary member of the Bayville and Sea Cliff departments.
Amid the pandemic, Chris was forced to come up with an alternate birthday plan, and she wanted to keep it a secret from Philip. The large cake she ordered might make him suspicious, she thought.
“I told Philip that I ordered a three-inch, homemade cannoli-filled birthday cake, but the store made a mistake and made a full sheet cake instead,” Chris said. “Since we had so much cake, I told him we should go to Centre Island Beach and offer some to the people flying kites there.”
Philip believed her, she said, and was surprised when he saw the Bayville and Locust Valley fire trucks and all of the vehicles following them.
Before they left for the beach, Chris cut the cake, with the intention of giving a piece to everyone who took part in the parade, although she was worried that only three or four cars would show. But her sister-in-law, Debbie Baker, had posted news of the event on Facebook. She knew people would come, although she admitted it surprised her that there were so many.
“I kept posting it over and over again, saying, ‘Please come,’” said Debbie, who also lives in Bayville.
Rae Natale, a close friend of the Baker family whom Chris calls “family,” said that every year, she and others worry that it might be Philip’s last. She has known him since he was 7.
When Philip was in school, there were proms to attend. Natale said she accompanied him to one. She marvels at his memory, saying he can recall her dress and even what she drank.
Philip still remembers spilling Sambuca on that dress, his mother said with a laugh.
“Philip has an amazing sense of humor,” Natale said. “He teases, he’s so full of life and energy. Philip is the kind of guy that if you feel down and out, go spend a half-hour with him.”
Natale credits Chris with Philip’s survival. His mother has done everything she can for him, Natale said. And it has never been easy.
Chris said that her son’s lungs are getting worse. He is on oxygen all the time now, and depends on a feeding tube. She takes care of Philip by herself, and, as she approaches age 70, she hopes someone will help her soon.
“He’s so big now, I can’t travel in the car without someone else because his oxygen tube falls out,” Chris explained. “And Philip can’t be left alone.”
When they arrived at the car parade Chris opened the door of their van so Philip could see everyone as they drove by. The air was frigid and it was windy, but he didn’t mind.
Each well-wisher was given a keychain with Philip’s photo on it, and a piece of cake. His gifts included lottery tickets and cash to help pay for an around-the-clock nurse. Chris said he won $160 and that people were generous, but he didn’t receive enough for the nurse.