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<\/p>\nIt was the pancakes on the table that got me.<\/p>\n
When I arrived at Dr. Elham Raker\u2019s home in Manhattan Beach on Feb. 14 to interview her and her 16-year-old daughter, Darya, about the teen\u2019s battle with long COVID, there was a plate of pancakes sitting alone on the empty dining room table.<\/p>\n
They were heart-shaped and neatly stacked, with whipped cream carefully piped along the edges and thinly sliced strawberries scattered across the top \u2014 a Valentine\u2019s Day offering meant for a teenager who, perhaps, should have already been downstairs.<\/p>\n
To me, it said this: Here was a mom trying her best to create something special, despite a situation that leaves little room for celebration.<\/p>\n
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Dr. Elham Raker and her daughter Darya Raker. (Photo by Melissa Heckscher)\n<\/p>\n
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Dr. Elham Raker with her daughter Darya Raker. (Photo by Melissa Heckscher)\n<\/p>\n
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Darya Raker, and her mother Dr. Elham Raker. (Photo by Melisssa Heckscher)\n<\/p>\n
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Darya Raker sleeps during her first hospitalization, for severe headaches, in 2022. (Courtesy of the Raker family)\n<\/p>\n
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Dr. Elham Raker and her daughter Darya Raker. (Photo by Melissa Heckscher)\n<\/p>\n
Expand<\/a><\/p>\n \u201cMornings are hard,\u201d Raker said to me apologetically as we chatted in the kitchen.<\/p>\n Several minutes later, a dark-haired Darya \u2014 sleepy-eyed and quiet \u2014 joined us.<\/p>\n \u201cGetting out of bed is hard,\u201d Raker said.<\/p>\n But this wasn\u2019t the usual teenage resistance to mornings. For Darya, a Mira Costa sophomore who loves to paint, play water polo and hang with her friends, waking up is genuinely hard.<\/p>\n \u201cI could sleep 12 hours,\u201d Darya said, \u201cand still feel like I didn\u2019t sleep at all.\u201d<\/p>\n Darya has been battling long COVID since seventh grade.<\/p>\n What began as a mild case of COVID-19 in December 2021 \u2014 a fever, nothing alarming \u2014 spiraled weeks later into debilitating migraines, vomiting, fatigue and brain fog. Soon, other symptoms followed: chest pain, shortness of breath and stomach problems.<\/p>\n \u201cAt one point, I asked, could this be long COVID?\u201d said her mother, who is a pediatrician and parent coach. \u201cAnd the response was basically, \u2018Yes, but what would we do differently?\u2019\u201d<\/p>\n The Raker family\u2019s experience reflects a growing but still misunderstood reality: for some children, the pandemic never really ended.<\/p>\n What is long COVID?<\/p>\n Long COVID, according to the Mayo Clinic, is a condition in which symptoms persist or emerge months after being infected with the coronavirus.<\/p>\n While more than 200 symptoms<\/a> have been associated with the condition, the most common include extreme tiredness, especially after activity; problems with memory, often called \u201cbrain fog\u201d; a feeling of being lightheaded or dizzy; an upset stomach and digestive problems; a fast or irregular heartbeat; and problems with taste or smell. Symptoms may stay the same over time, worsen, or come and go.<\/p>\n Long COVID has become more widely recognized in adults but remains controversial \u2014 and often invisible \u2014 when it comes to children.<\/p>\n \u201cMost families have no idea that their child can develop long COVID,\u201d said Megan Carmilani, founder of the international advocacy group Long Covid Families, an organization for which Raker now sits on the board. \u201cThey aren\u2019t being told by pediatricians, they aren\u2019t seeing it in school health communications and they aren\u2019t hearing it from public health agencies.\u201d<\/p>\n Early assumptions that the COVID-19 pandemic was largely sparing children reinforced the belief that they were safe from the virus, she added, leading many to dismiss lingeringsymptoms as behavioral or emotional issues.<\/p>\n \u201c(Pediatric long COVID) looks like a child who can\u2019t follow multistep instructions because of cognitive challenges,\u201d Carmilani said. \u201cIt looks like a child spending most of their time in their room or on the couch because of disabling fatigue. It looks like a child labeled irritable or anxious, not because of a behavioral issue, but because of inflammation.\u201d<\/p>\n But it\u2019s not psychological. Carmilani estimates that about 6 million children in the U.S. have experienced long COVID symptoms, with research suggesting<\/a> roughly 10 to 20% ofchildren may develop lingering symptoms after infection. The risk increases after reinfection<\/a>.<\/p>\n When tests are \u2018normal\u2019<\/p>\n One of the most frustrating aspects for families seeking answers is that there is no single diagnostic test for long COVID. Basic blood work and physical exams often come back \u201cnormal.\u201d<\/p>\n \u201cDoctors are too comfortable saying there\u2019s nothing wrong,\u201d said Dr. Jordan Vaughn, an internist in Birmingham, Alabama, whose clinic has treated approximately 6,000 long COVID patients since the pandemic began. \u201cWhat (they) really mean is, \u2018I don\u2019t have a biomarker and it doesn\u2019t fit a script that I read in med school.\u2019\u201d<\/p>\n Vaughn founded the Microvascular Research Foundation and is one of many long COVID specialists Raker connected with in her search for answers. He described long COVID as part of a broader category of \u201cinfection-associated chronic conditions\u201d \u2014 illnesses that disrupt the immune and vascular systems long after the initial virus has cleared.<\/p>\n \u201cLong COVID is up there with chronic fatigue, HIV, all of these sorts of things, in terms of its effect on the immune system,\u201d he said. \u201cThe downside is, at least in long COVID, we don\u2019t\u00a0 have a great therapeutic.\u201d<\/p>\n Among the most common issues that teens and adults face after COVID infection, Vaughn said, is POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia that affects blood flow and causes dizziness, heart palpitations and fatigue.<\/p>\n Vaughn said he has seen a surge in adolescents, especially high-achieving athletes, suddenly unable to tolerate school or sports.<\/p>\n \u201cThese are kids who were thriving \u2014 straight-A students, competitive athletes,\u201d he said, \u201cand now they can\u2019t get through a day.\u201d<\/p>\n Darya was diagnosed with POTS and small airway disease in 2022. For a time, physical therapy and accommodations helped her regain stability. She returned to school full-time, graduated from middle school and entered high school.<\/p>\n Then she got COVID again.<\/p>\n Within weeks, the migraines returned. The fatigue deepened. The POTS flared.<\/p>\n \u201cIt feels like playing Whack-a-Mole,\u201d Raker said. \u201cYou knock out one symptom and another comes out.\u201d<\/p>\n The school balancing act<\/p>\n Darya now has an individualized education plan, or IEP, that allows for late starts, flexibility and accommodations. She continues to play water polo, but conserves energy carefully.<\/p>\n The family sometimes uses disability boarding or accommodations at airports and theme parks, decisions that often invite judgment from strangers \u2014 because Darya \u201clooks fine.\u201d<\/p>\n \u201cThat\u2019s one of the hardest parts,\u201d Raker said. \u201cPeople will say, \u2018She looks good,\u2019 and I know they mean well, but it takes away from everything she\u2019s feeling.\u201d<\/p>\n With teachers, Raker said, she constantly explains that while Darya may appear fine at school, the effort comes at a cost.<\/p>\n \u201cInvisible illness is hard,\u201d she said.<\/p>\n For Darya, whose fatigue and headaches are near daily, distraction helps.<\/p>\n \u201cI still go to school. I still see my friends. I still do art,\u201d Darya said. \u201cI guess I\u2019m different. But then, everyone is. This is just my own thing.\u201d<\/p>\n When to consider pediatric long COVID<\/p>\n Even with two physician parents (Darya\u2019s dad, Charles, is an interventional radiologist), the Rakers found themselves moving from specialist to specialist: neurology for migraines,pulmonology for breathing, cardiology for POTS, gastroenterology for stomach issues.<\/p>\n Doctors validated Darya\u2019s symptoms but offered little in terms of treatment.<\/p>\n \u201cWe live in a country that\u2019s very good at acute care, taking care of things that have a biomarker and can be correctable in a short time period,\u201d Vaughn said. \u201cBut this is not that.\u201d<\/p>\n That gap leaves many families searching for answers elsewhere: Facebook groups, research papers and advocacy organizations.<\/p>\n Carmilani advises families to consider long COVID if symptoms persist three months after infection, especially patterns of fatigue, cognitive difficulty, headaches or dizziness.<\/p>\n \u201cA COVID infection in children can often look like a mild cold or even seasonal allergies,\u201d Carmilani said, \u201cwhich makes it easy to miss.\u201d<\/p>\n Vaccination reduces the risk of long COVID in children, she added, though protection wanes over time and reinfection increases the risk.<\/p>\n \u201cThe best way to lower a child\u2019s risk,\u201d Carmilani said, \u201cis to prevent infection in the first place.\u201d<\/p>\n Is there hope?<\/p>\n Experts say yes \u2014 but not necessarily quick fixes.<\/p>\n Vaughn estimates roughly 70% of his patients improve significantly with tailored treatment strategies. But recovery is rarely linear, and treatments are largely experimental.<\/p>\n \u201cA lot of them ask, \u2018How will this affect me in the long term?\u2019 And the honest truth is, I don\u2019t technically know,\u201d he said. \u201cI do know that what we did helped and that we were going tocontinue to figure it out.\u201d<\/p>\n Raker, for her part, said she believes her daughter will improve, though not without continued trial and error. When asked whether Darya plans to go to college in two years, Raker paused.<\/p>\n \u201cI don\u2019t think she\u2019ll be ready, to be honest,\u201d Raker said. \u201cI\u2019ll have to wait and see what the next year looks like.\u201d<\/p>\n Darya, who wants to study astronomy, is already researching colleges that offer accommodations. She hopes Arizona State University \u2014 which her brother attends \u2014 could be an option.<\/p>\n \u201cBut it\u2019s really, really hot,\u201d Raker said. \u201cSo we\u2019re like, OK, could she get rides to each class so she wouldn\u2019t have to walk from class to class? And they said, \u2018Yeah, we could do that.\u2019\u201d<\/p>\n As for why she chose to share her story now, Darya said she hopes it helps others feel less alone.<\/p>\n \u201cIt\u2019s validation,\u201d she said, shrugging her shoulders, her big, dark eyes turned downward. \u201cJust seeing someone who\u2019s gone through the same thing. I never had that.\u201d<\/p>\n