“If he doesn’t sit.”
This was the thought running through Toni Barnes’s head one afternoon as she played on the couch with her three-month-old grandson, Amari.
Born in the fall of 2010, Amari Elijah Barnes made his entry into the world safely and without incidence. But Eli, as his grandmother lovingly called him, didn’t seem to be progressing in the typical ways Toni was used to seeing from her grandkids. As she cradled him in her arms or fed him his bottle, she couldn’t shake the feeling that something was off. “But you’re my Eli,” she whispered to him. “And I’ll always take care of you.”
Amari was taken to the Riley Hospital for Children in Indianapolis where he was diagnosed with Trisomy 18 (Edwards’ Syndrome), a rare disease that causes severe developmental delays due to an extra 18th chromosome.
That doesn’t mean it’s been all smooth sailing. Far from it.
In addition to his developmental delays, Amari also suffers from seizures…
Since that day on the couch when her heart told her something was wrong, Toni has been by Amari’s side. She knows him better than anyone. Really knows him.
And though some individuals with Trisomy 18 can speak and walk with assistance, for the last decade of his life, Amari’s development has hovered around the age of six months. He makes sounds, laughs, and “talks” to get Toni’s attention, but he’s remained mostly non-verbal and non-mobile.
It hasn’t kept them from growing closer and closer over the years, though, and their bond is stronger than any limitations he might have.
“If he’s sitting quietly or lying in his bed, I go to his bedroom door and begin softly calling his name, and he responds with smiles and waving his limbs,” she told us. “He is a joy.”
As his caregiver, Toni has sacrificed a lot to put Amari’s needs first. Yet, she stays. Each day that he’s alive – each day that he’s still with her – is a gift. There’s not a place in the world that could keep her away.
When Toni first contacted us, she had a need for a new car seat and activity chair for her Eli. Because of his brittle bones, many surgeries, and numerous medical needs, Amari is homeschooled. The family loves summertime; watching neighbors pass by on the sidewalk or soaking up the sunshine from the back porch. They’ve gotten by with what they had, but Toni had her sights set on an activity chair for years, just waiting to save enough money to get it for him.
We met with Toni, Mario (Amari’s dad), and his two siblings over video a few weeks ago. Truthfully, we simply intended to get to know them a little better, hear more about how their grant items could help them, and that would be that. The call didn’t quite go that way, though.
When Toni initially applied, she had mentioned a van conversion. Amari is (thankfully) a growing boy, and his weight is beginning to cause issues with transportation. There was just one problem – they don’t own a van to convert. Toni was hoping she could save enough to make that happen, but knew, realistically, it wouldn’t be possible for quite some time. Maybe ever. She moved forward with her request for a better car seat and activity chair instead.
It’s no coincidence that Amari is our 400th grant recipient since we started this wild ride in 2012. His story called for something big. And thanks to committed donors who have been with us every step of the way, another life-changing grant item was possible.
Last Tuesday, September 29, Brian Mercedes from Chive Charities and members of Chive On Chicago, Chive on Indiana, and Wisconsin Chive surprised Toni and Amari with his new activity chair…and a new wheelchair-accessible van from our partners at AMS VANS to go with it.
As the new van pulled into the driveway and Amari was safely strapped into his long-awaited activity chair, Toni knelt down beside him, looked into his deep brown eyes, and whispered, as she has since the day he was born, “You’re my Eli. And I’ll always take care of you.”
What can we do next? Let’s find out. DONATE HERE.
Like this post
Why funny? Because individuals imagine in the truthfulness of funny data. People Read newspaper for up to date information which they will’t get as a result of busy life fashion and extra for the new product provide, new schemes provided by close by distributors. Most of the individuals choose information picture paper to get new product data and good shopping for alternative and likewise for information replace. Most of the Business group used this media to advertise their product or providers as a result of funny pic are cheap promoting medium which covers quite a lot of clients shortly and having good impression on the buyer relating to truthfulness which supplies them good returns. It’s additionally a great way to share the announcement which spreads shortly to need a part of society.Link