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Fundraiser Launched to Help Family of Young Boy Fighting Rare Disease
Two weekends before Christmas Michelle Leyva saw her son Jaycee thriving, a typically active two-year-old with an abundance of energy.
He played soccer on Saturday, took his tumbling class on Sunday and the family, like countless others, was looking forward to the holidays.
In a matter of two days, the lives of Leyva, her husband Oscar Aguilar and Jaycee were turned upside down. They spent Christmas in Maria Fareri Children’s Hospital in Valhalla wondering how long Jaycee will be there and how well he might recover.
Jaycee was diagnosed with Guillain-Barre syndrome after a couple of harrowing days of being shuttled back and forth between home their White Plains home and the hospital emergency room. It wasn’t until their pediatrician saw Jaycee nearly two days after their initial visit to the ER, that they must return.
“The doctor said you needed to go to the ER again – now,” Leyva recalled. “We went to the ER and by the time he was being treated he couldn’t sit or stand on his own. He couldn’t hold himself up. He couldn’t sit himself without holding onto something.”
Leyva said late in the day on Tuesday, Dec. 13, she noticed Jaycee was walking around the house as though he had a diaper rash. Over the next couple of days, Jaycee wasn’t eating, he didn’t want to sit up or walk, and when he did try, his mom said he walked as if he was drunk.
Medical staff performed a spinal tap and a three-hour MRI, which preceded a trip to the Pediatric Intensive Care Unit (PICU).
“He couldn’t breathe well on his own, so we had to go (to the PICU),” Leyva said.
When her longtime friend, Megan Caceres, learned of Jaycee’s plight over social media, she reached out to Leyva to see what was going on. Soon after, Caceres set up a gofundme page to help the family. In the two weeks since Jaycee began showing symptoms, neither Leyva, a nanny, nor Aguilar, who’s employed by a tree company, have been able to work, adding more stress to their situation. Neither have jobs that provide paid sick time.
Caceres said she also hoped to raise awareness for other parents to advocate for their children when they know something isn’t right, even in situations where some medical professionals are telling them they can go home.
“The creation of the fundraiser was, yes, to help her support her family, but also to make people aware because now people are learning about it,” Caceres said. “We’ve been lucky that a lot of people have been very kind, especially now during the holidays.”
As of Monday, more than $2,300 had been raised.
Dr. Celine Rahman, director of neurocritical care at Phelps Hospital, Northwell Health, described Guillain-Barre syndrome as a nerve disease caused by one’s own immune system. Rahman said when it does occur, symptoms typically arrive two to four weeks after an infection.
Usually, when a person has an infection, their body creates antibodies to fight it off, she said. But if proteins in someone’s body are too similar to those of the infectious agent, they attack parts of the body.
Jaycee had had a bad cold during the week of Thanksgiving before recovering, Leyva said.
Rahman said Guillain-Barre is rather uncommon with only about 3,000 to 6,000 reported cases a year in the U.S. It affects both children and adults. Only about 15 percent of cases require the patient to go on a respirator.
Pain, including a pins and needles sensation, and an inability to walk are the most common symptoms.
“In almost all cases the paralysis is temporary,” Rahman said. “Obviously, there are going to be some really severe cases where the child may have long-term disability, but the vast majority – 85-plus up to 95 percent – of patients recover completely, although it may take several months to get there.”
In many cases, physical rehabilitation is needed.
Leyva said it’s still too early to determine what the outcome will be for Jaycee. She said the doctors are hopeful that since he’s so young that could be in his favor. It’s also been difficult to watch him in discomfort, which has been further heightened due to him contracting COVID-19, Leyva said.
However, the generosity of others and their support have been a source of strength, she said. Leyva and her husband have been staying at the Ronald McDonald House to be nearby.
“It’s an amazing feeling to have the community helping and pitching in, especially since we’re not working,” Leyva said. “We’re not even thinking about that now.”
To help the family and to learn more about Jaycee’s journey, visit https://www.gofundme.com/f/donate-to-help-jaycee-walk-again?utm_campaign=p_cf+share-flow-1&utm_medium=copy_link&utm_source=customer
Martin has more than 30 years experience covering local news in Westchester and Putnam counties, including a frequent focus on zoning and planning issues. He has been editor-in-chief of The Examiner since its inception in 2007. Read more from Martin’s editor-author bio here. Read Martin’s archived work here: https://www.theexaminernews.com/author/martin-wilbur2007/