It’s about living every moment to the fullest for the Marinoff family.
They laugh, play and support one another, in the best moments and through the worst.
“It’s the most devastating disease, I’ve never heard of," Marielle Marinoff said.
You’d never know it, but behind this incredible smile is a 22-month old fighting for his life.
“We actually didn’t know that there was anything out of the ordinary with Aiden," she remembered. "We had prenatal testing done for genetic diseases, nothing was flagged. Not even when he was born."
Early on, Aiden suffered from respiratory and ear infections, GERD (acid reflux) and a spinal deformity called Kyphosis.
“We took him to early intervention and at about 15 months he qualified for lack of language and gross motor delays because he still wasn’t talking or walking much,” she described.
They saw several specialists but never got a clear answer.
“Nobody put the pieces together until it was far down the line,” Jason Marinoff said.
It wasn’t until June of this year when a neurologist finally diagnosed Aiden.
“She suspected after reviewing his medical history that it was an MPS disease,” Marielle added.
MPS II- also known as Hunter Syndrome, is extremely rare.
“Aiden will most likely plateau between ages two and four years old and then between usually four and six years old, these children regress back to an infantile state,” Marielle explained. "Aiden does have the severe form, and they don’t usually live past their early teens.”
A statistic Marielle and Jason try not to dwell on as they want to make life as fulfilled as possible for him and his older brother, Ethan.
“I love my brother,” Ethan said.
“It’s been difficult because Aiden can get away with certain things because aggression is a part of the disease,” Jason explained. "We punish Ethan, or put him in timeout differently than Aiden because cognitively Ethan understand but Aiden doesn’t.”
Both are full of energy, require a lot of attention, and at times exhausting.
'"There's so many days, where I’m just so tired," Marielle said. "We’re trying to remain positive as best as we can.”
It’s a fight every day and an expensive one with very few options.
“Aiden gets five-hour infusions of Elaprase," Marielle explained. "It’s one of the world most expensive drugs and that manages the physical symptoms.”
Unfortunately, they missed the deadline for a recent neurological clinical trial by only three months, which is exactly why they want to get the word out and raise awareness.
“Everybody needs to understand that this disease can happen to anyone and it needs funding for research," Marielle said. "These kids don't have time to wait, it’s a life or death matter and these kids need the help now.”
The Miranoff's also have a GoFundMe page and are in the process of forming a 501(c)3 non-profit called Sock-it 2 Hunter Syndrome to raise money for research for a cure.