The Greenport community has rallied to help a family dealing with the unimaginable.
It started in December with a stomach bug, Katria Nieves of Greenport recalled last Thursday from a room at Stony Brook University Hospital.
Ms. Nieves; her children, Mia, 3, Max, 2, and Myles, 6 months; and their father, Marvin Bell, all became sick before Christmas. In January, Max was officially diagnosed with the norovirus. Over a month later, Max remains hospitalized and in intensive care.
“[Max] just never fully recovered,” Ms. Nieves said during an interview. For weeks on end, she did everything she could — keeping Max hydrated and seeing doctor after doctor.
But by Jan. 16, she knew things weren’t right. “His eyes were twitching and wandering,” she said. Preparing for a trip to the emergency room at Stony Brook, she stopped for gas. As she filled her tank, she looked in at Max, who suddenly began having a seizure.
“I wasn’t going to stop for gas, but I knew I had to and, in retrospect, was so glad I did,” Ms. Nieves said. A station attendant dialed 911 and EMTs arrived within minutes.
En route to Stony Brook’s pediatric intensive care unit, Max suffered three more seizures. The fifth one, which occurred in the elevator up to the ICU, stopped his heart.
“Then the madness really began,” Ms. Nieves said.
Doctors eventually determined the seizures were caused by dangerously low sodium levels.
As a result of the seizures, Max has severe brain damage that will affect all of his fine motor skills. “He can barely move all of his limbs,” Ms. Nieves explained, and he has relied on a breathing tube.
Despite some improvements, like opening his eyes and smiling, a second cardiac arrest event Jan. 28 set his progress back.
“It is torture watching him,” his mother said. “My family is devastated.”
Ms. Nieves has been unable to return to work as a client support specialist at Community Action Southold Town and a caregiver with At Home Services For Independent Living. Mr. Bell, who works at the Greenport Laundromat, is caring for their two young children and has also been unable to return to work
To help the family, her employer, Holly Vescovi, created a GoFundMe page that raised over $14,700 in two weeks.
“The amount of support and generosity [from the community] literally gives me chills,” Ms. Nieves wrote on the fundraising platform, thanking contributors for an outpouring of support.
Uncertainty prevails, as Max remains intubated, undergoing MRI and seizure scans. Since his brain is still developing, there is a chance he could make a full recovery, despite a small hemorrhage.
“We have a really long road ahead of us,” she said.
The funds, she said, will help with daunting medical costs and Max’s recovery. The family is considering a move to Valhalla, N.Y., so Max can receive care at Blythedale Children’s Hospital.
“I will go anywhere,” Ms. Nieves said, to give him the best chance at fighting his illness and recover from his brain injury.
She described a helpless feeling, seeing her once active 2-year-old confined to a hospital bed. “As a mother, you always reflect on the shoulda woulda couldas. It’s killing me,” she said.
Before he fell ill, she said, Max was a “super rambunctious” child who loved to dance.
His progress, slow and steady, is what’s keeping his mom’s faith strong. “It’s a miracle he survived as much as he did,” she said. “He’s really my superhero.”
To keep up with Max’s progress and donate to the family, visit gofundme.com/help-baby-maxwell-and-his-family.
Top photo caption: Max Bell, 2, remains hospitalized in the intensive care unit after suffering a series of seizures last month. (Courtesy photo)