As any family will tell you, it takes a village to raise your children. Add the extra challenges of being a military family – frequent relocations, deployments, long days on base – and that phrase takes on a whole new meaning. It’s not just a catchy saying at that point; it’s a way of life.
In 2015, Joe, Sandra, and their two-year-old son, Denzel (yes, named after that Denzel) moved across the country from New York to California for Joe’s role with the U.S. Navy.
She became so worried, she drove herself to the hospital for further testing.
“The doctor informed us that in addition to the baby not moving, my fluids were low and his heart rate was dipping,” explained Sandra. “Her words were a blur, but the implication was that had I not come to the hospital that day, he may have been stillborn.”
But Sandra had gone to the hospital that day, and miraculously, hours later, Roman Ari (meaning “Strong Lion”) was born alive and healthy on February 29, 2016 – Leap Day.
For the first year or so of his life, Roman seemed like a typical happy, growing baby boy. He loved playing on the floor with his big brother, walking with a push toy, and climbing on and over everything. It wasn’t until he was 18 months old that Sandra began to worry. She looked to her village for support.
Despite having two MRIs, two genetic tests, an EMG, and a muscle tissue biopsy, the family has no idea why Roman is losing mobility.
“Thankfully, I saw another parent on Facebook mention the Undiagnosed Diseases Network (UDN), and I applied right away,”. Sandra said. “But COVID-19 put a pause on any procedures and tests that were to be done by the UDN.”
For reference, in order to be accepted into the UDN, participants typically have a condition with a suspected underlying genetic cause that has not been diagnosed. Currently, the UDN is only able to accept less than 50% of those who apply. Roman was one of them.
It’s been a year since he was accepted into their program and we are just now resuming talks with them to figure out how to move forward.”
“It breaks my heart to see Roman watch his brothers play, knowing that he can no longer get on the floor and roughhouse with them,” Sandra tearfully explained. “I wonder if he misses it.”
“Only his brothers can get a chuckle out of him without even trying, though” she continued. “He loves getting fist bumps from them and despite his regressions, Roman smiles through it all.”
Roman is nonverbal, and his hands lack the dexterity for sign language. Though Sandra and Joe have tested speaking devices and other technology, Roman always prefers to sit one-on-one with someone and look them in the eye. He’s a people person through and through. And with the village of people he has behind him now, that’s a good thing.
Roman is now wheelchair-bound and has several doctor’s appointments at any given time. He also requires ongoing physical therapy, occupational therapy, and speech therapy. It’s a lot to handle and demands a full-time commitment. Adding to the challenges, Joe and Sandra share a car, which means Joe has to either get a ride to the Navy base from a shipmate or take the day off so that Sandra can use the car on appointment days.
Does that sound like a good, long-term solution to you? Not when you’re in the Chive Charities community.
(This seems like a great time for a signature Roman fist bump:)
It also takes a village to see a person in need and rally behind them with a life-changing grant.
Our mission is to make the world 10% happier, and you can bet it’ll take a village to get there. $5, $20, $200 – add it up and you get more than 400 recipient lives changed and counting. You want a community? You just found the best one there is. DONATE HERE.
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