When the Herald asked 9-year-old West Hempstead resident Aiden Simms to describe himself, he giggled. “That’s what he does a lot,” said his mother, Nicole McNair. “He has a lot of energy, and he loves to smile.”
Bashful at first, Aiden spoke about his love of playing sports, dancing to the video game “Just Dance” on the Nintendo Wii and enjoying the outdoors. Many might find it hard to believe, given his energy, that he was hospitalized more than 10 times by the time he was 3. He was born with ornithine transcarbamylase deficiency, a rare liver disease that causes high levels of ammonia to develop in the blood. The ammonia can make its way to the brain, which can results in a coma, brain damage or death.
“His body couldn’t process protein because of his disorder,” explained McNair, 46, a special-education teacher. “His liver was missing an important enzyme to process protein, and that’s what caused everything to go haywire.”
Aiden was born at New York Methodist Hospital in Brooklyn, but was soon transferred to Mount Sinai Medical Center in Manhattan, which was better equipped to treat him. After three weeks there, he was put on a plant-based diet, and limited to no more than 10 grams of food per day. Pediatricians taught his parents, McNair and Roland Simms, to prepare his medicine.
“It was a lot to process, but we learned how to take care of him,” McNair said. “We made sure that his protein levels were low, but even with that, his disorder would put him back in the hospital.”
When Aiden was just 2, doctors placed him on the liver transplant list. They had told his parents when he was born that a liver transplant was a possibility, but they wanted to see if his health would improve. He received a partial liver from an adult donor in June 2013, in surgery that lasted 12 hours. But there were complications in the weeks afterward, and he needed still another new liver.
“There was just a feeling of hopelessness,” said Simms, 46, a train operator with the MTA, “and we were just hoping that the doctors were able to do whatever they could to help him survive.”
Aiden received a second liver — this time from another child — on Sept. 1, 2013. He stayed in the hospital for another three weeks to recover, but this time there were no complications.
“It was bittersweet to know that we’re getting a lifesaving organ for our child because it’s coming from another child,” McNair said.
Since that second transplant, Aiden has had only three visits to the hospital. He started pre-kindergarten at St. Mary’s Metropolitan Home Care in New York City in 2014, where the school campus had its own hospital in case of an emergency. He was also accompanied by a nurse who fed and monitored him.
“We wanted him to start developing a regular life and just be a kid,” his mother said. “That was the first time where he didn’t have to worry about being in the hospital.”
McNair said that Aiden has a few developmental delays due to his frequent early hospitalization, so he has undergone speech, occupational and physical therapy, along with sensory training. McNair said that Aiden’s home care service is paid through their insurance, while school services is paid through their taxes. One of the few services they pay for is Aiden’s sensory gym.
“A lot of people wonder about the best ways to go about getting services,” McNair said, “but it’s a balancing act.”
Now a fourth-grader at George Washington Elementary School in West Hempstead, he is learning remotely. Amid the coronavirus pandemic, his parents stopped all of his home care services, and they have not allowed any visitors in their home since mid-March because his immune system is compromised.
As a result of quarantining and social distancing, Aiden’s anxiety level increased. “He was afraid whenever any of us left the house, because he didn’t want us to catch the coronavirus,” McNair said. “Even though we don’t sit and watch all the images in the news, he understands what a virus is.”
His parents installed a pool, a basketball hoop and swings in their backyard this summer, which allowed him to be outside while safely distanced from others.
Aiden’s parents and his 16-year-old brother, Simeon, have all become organ donors, and raise money for the American Liver Foundation. They have also worked with Live On NY, a nonprofit organ procurement organization, to help raise awareness of the importance organ donations. Aiden celebrates every Sept. 1, the anniversary of his second liver transplant, and they periodically visit the doctors and nurses who treated him to share his progress and thank them. While there have been no hospital visits this year due to the pandemic, and this month’s celebration was limited to the four of them, his parents remained thankful.
“Sometimes when we look back on it . . . and seeing where he is now,” Roland said, “it all just seems like a dream.”