Oakley Debbs was his parents’ pride, the 11-year-old from West Palm Beach, Florida was a straight A student with a sunny disposition and ready smile. Despite some struggles with asthma control, Oakley was an outstanding athlete – a gifted soccer and tennis player, flag football quarterback, and the marathon runner who scooped up the medals in all his races.
But tragically, his loving parents – Merrill and Robert Debbs – must now learn to speak of him in the past tense. While on a Thanksgiving vacation in Maine, Oakley ate some cake on Nov. 24, 2016 that contained either nut extract or nuts, and the boy with tree nut and peanut allergies suffered a fatal anaphylactic reaction.
As they prepare for a big memorial tribute to Oakley on Dec. 10, 2016 Merrill and Robert Debbs spoke to Allergic Living about their loss, their concerns about vital information they never got at the allergist’s office, and their resolve to raise anaphylaxis advocacy through their new Red Sneakers campaign. (Red was Oakley’s favorite shoe color.)
“Whatever we can do to help people protect children who have these food allergies – labeling, education to protect these children so it never happens again,” says Robert of the couple’s decision to start a campaign and website while still coming to grips with their son’s death. Both parents now think they were far more informed about asthma than they were about the management of food allergies and risks of anaphylaxis.
While they were advised to avoid nuts and peanuts and knew some basics, “we have been in the hospital many times for asthma, so the nut wasn’t our real issue,” says Robert. “The focus had been 95 percent on controlling the asthma.”
To inform others, they relate what happened on that evening of Nov. 24. Their relatives had ordered a Thanksgiving gift basket with a ham, and it turned out to also contain items including a pound cake. “We didn’t even see the cake; it had just been opened up and set on the island of the kitchen,” says Merrill. But her son, who was normally very good about checking labels for nuts and peanuts, on this occasion just took a piece of cake when he could see no obvious sign of nuts. The trouble was, his father says, that Oakley hadn’t liked the food at a restaurant they had dined at and he was still hungry.
“He thought it was just a piece of cake,” says Robert. “But when he ate it, he came over and said it might have contained nuts.” His mother had some of the cake, and thought she tasted a nut flavor as well. “Merrill did what we usually do, she gave him Benadryl [pills],” says Robert. “And he came back and he said that he felt fine.” His only symptom, at that point, was a hive on his lip, which went away with the antihistamine.
But that would soon change. Oakley and his mom went upstairs to get ready for bed. They brushed their teeth together, and he mentioned having some pain in his chest, “just a little soreness on the left side,” says Merrill, who notes that at that point “he was breathing fine.” They turned in for the evening, he in a room with his cousins, she in a room a floor above. About 15 minutes later, Oakley came up to his parents’ room, complaining of a stomach ache. Suddenly, he needed to vomit.
He felt better afterward and Merrill put him in bed with her, giving him more Benadryl (he’d thrown up his pills). Quite soon, he needed to be sick again. Back in bed, his mother set up the asthma nebulizer, since her son’s breathing was deteriorating, with her mother-in-law now in the room trying to help. Merrill was about to give her son prednisone when he suddenly blurted out to call 911.
With both her mother-in-law and husband now in the room, Merrill ran to do just that. Although the EMTs arrived swiftly, Oakley’s blood pressure had dropped and he suffered a heart attack and fell unconscious. The EMTs gave the boy two successive doses of epinephrine, but this was well over an hour after he’d eaten the cake. Oakley later died in hospital from this severe reaction.
In hindsight, the Debbs feel they were not adequately informed of the risks of food allergies by their allergist’s office. While they own an epinephrine auto-injector, the couple say they weren’t aware that it is the only first-line drug for anaphylaxis (since antihistamines can’t stop systemic symptoms). “I wasn’t aware, no one told me,” says Merrill.
“So our advocacy also relates to the fact that we didn’t know that,” says Robert, explaining the impetus behind the Red Sneakers campaign and his sense that far greater education and communication between allergists and their patients is needed.
Nor had the Debbs been made aware of the Natalie Giorgi case and newer allergists’ advice since her passing in 2013 to err on the side of using epinephrine if a known food allergen is consumed.
Both parents say that their son had numerous allergy triggers – from pollens, to cats, birds, feathers and dust mites. And he’d also tested positive to nuts and peanuts. But Merrill says that other than strict avoidance, they weren’t given much information about food allergy management. “I knew the asthma, and I treated him for asthma every day.”
Of her hopes and ambitions for the Red Sneakers campaign in the months ahead, Merrill comments on the need to channel Oakley’s tragedy into something positive for her family, which includes the boy’s twin sister, and for the food allergy community as a whole.
“This child of mine, he was a rock star, he was a good, good kid. And always in my heart of hearts, I knew that he would make a difference in his life – I just didn’t know it would be after he passed away. So that’s a big part of my driving force – the legacy of Oakley.”
See the Debbs’ allergy awareness site: RedSneakers.org