Gino Pinero began fighting for his life as it began, when the now 4-year-old was born premature, at 29 weeks. He’s won round after round since then, but it hasn’t been easy.
And Amber Champagne Pinero and her husband Raphael will never think twice about walking the difficult road they have as parents, and making the sacrifices they have along the way. Yet the hardships are very real for the Ama family.
They are parents of three: 16-year-old Chase, 6-year old Ava, who is autistic, and Gino, who suffered a Grade IV interventricular brain hemorrhage shortly after his birth.
“Grade IV is the worst you can have, really,” said Amber.
It caused him to have hydrocephalus, a condition where spinal fluid accumulates in the brain and cannot drain properly. He was airlifted to Children’s Hospital in order to receive the attention he needed, which included having a temporary – then permanent – shunt put in to drain the fluid.
Gino is required to have a shunt put into his brain every few years to drain the fluid, in order for him to live. Since his original shunt was placed in, he’s had to have five shunt replacements. In total, he’s had 13 different surgeries in his short life, though Gino’s not letting it stop him – he’ll celebrate his fifth birthday later this month.
Those complications have led to other diagnoses including cerebral palsy, seizure disorder, cortical visual impairment, chiari malformation type I and severe developmental delay. He is non-verbal and is not walking.
“It’s pretty rare, all told,” Amber said. “You go out and find other people who are dealing with it, so it seems less so … with this, we’ve learned that knowledge really is power. We’re finally starting to understand things, because at first … it was absolutely terrifying.”
Some can have shunts put in that last for 10 years. But, to date, Gino has seen six shunts fail.
“His fails every year. It’s crazy,” Pinero said.
The family is crossing their fingers that he will be able to attend school in the coming year – though he was enrolled in pre-kindergarten before, he fell too ill to attend.
“It’s just a lifelong thing. If he doesn’t have the shunt, he could suffer more brain damage, and then everything starts shutting down,” Amber said.
Thus, sacrifices are made.
“We can’t really go anywhere … not much free time, ever,” she said. “We don’t do a lot of what we used to anymore. I quit my job when he was born because nobody else, realistically, could have watched him. It’s put a strain on us.”
The fishing team Bloody Decks has adopted Gino and the Pinero family as a cause for its upcoming annual fishing rodeo fundraiser, in hopes of helping the family offset costs and get Gino the best care possible through proper therapy and equipment that won’t all be covered by insurance. The tournament will take place Labor Day Weekend, Aug. 29 through Sept. 1, at Wake Side Marina.
“Anyone can come … it’s a fishing rodeo, but we’ll be cooking, we’ll have music,” said Dwayne Plaisance of Bloody Decks. “It’s all for a great cause. This is our fourth year and we’ve doubled our turnout each time, so we’re excited.”
Said Amber, “It’s overwhelming … just so nice that they’d think of us and go through so much to help us. It’s just very touching.”
Amber said the hope is that one day Gino will indeed begin to walk and talk.
She’s seen him make considerable progress.
“There was a time we didn’t know if he’d be able to sit up on his own, and he can do that,” she said. “Before, all he could do is watch TV. Now, he can go outside, can get himself around … it’s improvement. As far as communication, that would be a lifesaver … I know a lot of his frustration comes from not being able to communicate with us.”
Coping with the situation is difficult, but the family focuses on staying positive.
“He can see the world in his own way and seeing him happy … when he’s at therapy and he’s enjoying himself and making strides, it’s great to see it,” she said. “Sometimes, it all makes you want to go crazy, but if you keep focusing on the bad, then you end up missing all the good.”