Rain or shine, 13-year-old Eli Mollineaux always has a smile on his face — even as he battles a rare mitochondrial disease known as Pearson marrow-pancreas syndrome.
On Wednesday, Suffolk County honored Eli for his sunny disposition despite his condition, with a proclamation. Now, the month of September is Mitochondrial Awareness month, and Suffolk County officials went a step further, calling the proclamation “Eli’s Law” in light of the Huntington native’s 14th birthday this Saturday, Oct. 3.
Eli’s birthday is yet another milestone for him, his family and their friends.
“The lifespan for kids with Pearson’s is around 3 to 4 years old,” said Alyssa Mancuso, a family friend of 10 years. “So the fact that Eli’s turning 14 is huge.”
Children with Pearson marrow-pancreas syndrome, an incurable multisystem disorder, have problems with the development of blood-forming cells in the bone marrow that have the potential to develop into different types of blood cells.
According to Eli’s mother, Ellen Mollineaux, the “mitochondria is [the] battery for cells and [Eli] is missing a big part of that battery.”
Mollineaux remembers her son’s condition developing when he was a infant, as he was often sick and didn’t act like a typical child.
“Cognitively, I knew he was there, but all of a sudden he was sleeping more and wasn’t playful,” Mollineaux said. “[He] always wanted to be held and hugged and I knew something was wrong.”
After taking Eli to his pediatrician, a blood test revealed Eli’s hemoglobin level was around 1.9 grams per deciliter, when the average 6-month to 2-year-old child’s level should be around 12, which means his body was running out of blood. Mollineaux said doctors rushed Eli to the North Shore Hospital in Manhasset for a blood transfusion.
“It was as if they filled his tank up with gas,” Mollineaux said. “He sat up and within minutes; all the skills he didn’t have, he had.”
Mollineaux received the transfusion in September of 2002. While Eli was doing well for a few years, his disorder has progressed in the last several months. According to his mother, his tremors are getting worse, making it difficult for him to eat — especially his favorite food, soup. Walking is also more difficult.
Despite this, Eli remains positive.
“He will lose his balance when he tries to walk and he doesn’t say ‘It sucks,’” Mollineaux said. “If the doctor asks him… ‘How you doing?’ Even though he can’t walk [properly, he says] ‘Great. Everything’s good.’”
During an interview with media, Eli’s older brother, Josh, also commented on his brother’s sunny disposition. He said his brother is a happy kid who is indifferent to his illness.
The only thing Eli doesn’t like, is having his blood drawn.
Regardless of his hardships, thinking about school and seeing his friends is what keeps Eli’s spirit up. During an interview, he said art was his favorite subject at school.
Legislator William “Doc” Spencer (D-Centerport), who was present at the press conference where Eli received his proclamation, said “Eli’s Law” will honor Eli’s courage, while bringing awareness to his condition. Spencer said that Eli and his spirit is inspiring, and gives hope to those who are battling their own adversities.
Although his current prognosis is not very good, Ellen Mollineaux said her family clings to their motto.
“Nobody knows their future,” she said. “That’s like our motto. No one knows what’s going to happen tomorrow. Horrible things happen every day and we just move on.”