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Antonio R.

First strangers, then family

Sometimes, people come into your life so unexpectedly and with such impact that it’s hard to separate the before and after.

One minute, you’re strangers. The next, you’re family.

Meet Benny and Kalynn. 

Even before Antonio was born, his mom, Benny, knew pretty immediately that they were in for a long ride. At first, doctors told her they suspected her son had Down Syndrome. She returned every two weeks for follow-up appointments, and each time, they found something else that was worrisome. 

When he finally made his way into this world, way earlier than expected, he didn’t have Down Syndrome – but the other challenges were still there. Benny had been knocked out for the surgical procedure, so when she opened her eyes and the operating room lights came into focus, she took a minute to catch her breath, turned to the nurse, and asked, “Is my son alive?”

He was, but it would be hours before she would be able to see him, worry and anxiety washing over her like a rolling wave. 

Antonio was born with Spondyloepiphyseal Dysplasia Congenita (SDC), a condition that results in short stature and skeletal anomalies that primarily affect the spine, arms, and legs. Antonio’s SDC diagnosis eventually resulted in his development of Scoliosis and Kyphosis, which basically means his spine curves in an “s” or “c” side-to-side shape, and with an abnormal curve towards the back of the body.

He had a lot of hurdles in front of him, but as his big brown eyes looked back up at her, Benny knew they could get through anything together. She didn’t know her life would change again, thanks to the spirit and heart of an incredible NICU nurse named Kalynn.

Kalynn had worked in the neonatal intensive care unit for more than two decades, pouring her caring nature and expert-level skills into each tiny baby who entered her floor of the hospital.

She and Antonio were fast buds, and she helped him through some pretty big medical moments, like getting a feeding tube, going onto a ventilator, and needing a trach. Through it all, she constantly communicated with Benny, giving updates on Antonio’s care and reporting on his day.

“Benny is the superwoman in this story,” Kalynn told us. “She was taking care of her oldest child, Breanna, while juggling driving long distances to the hospital to spend time with Antonio. And she advocated for him every step of the way.”

But Benny just smiled and shook her head, saying, “Kalynn is our angel. Being apart from my newborn son was heartbreaking, but I felt at peace knowing he was in her hands.”

While Antonio was having a hard time, Kalynn was in a silent struggle of her own. She took a lot of pride in the level of care she provided to her NICU babies, but the Covid-19 pandemic was wreaking havoc on her approach. They had more critically-ill infants than staff, and she felt stretched thin. Plus, there were a lot of restrictions in place to keep the babies safe from germ exposure, and while that was necessary, it came with one major downside: the parents were unable to visit their children.

“Three separate times, I discharged babies whose parents hadn’t seen them in person since their birth,” Kalynn said. “They had only met their children through video – some of them after spending weeks or months in the NICU.”

“It was just breaking my heart,” she continued. “And I was starting to question staying in a career where I couldn’t be the nurse I wanted to be.”

While this was all happening beneath the surface, Antonio was getting strong enough to go home himself.

“This is why I call Benny a superwoman,” Kalynn said. “Many babies who require a feeding tube, vent, and trach do not go home with their parents. That level of care usually means they’ll enter a facility instead. But Benny learned how to do everything to ensure Antonio could safely go home with her.”

Benny and Kalynn had kept in contact all through Antonio’s journey in the NICU, and a friendship formed between them. Once Antonio was discharged, Kalynn continued visiting him at home at least once monthly.

“I remember it was my birthday, and I drove over to Benny’s house to visit with them, and on the drive over, I’m contemplating leaving the NICU,” Kalynn recalled. “And then Benny told me they weren’t sure if they were going to have in-home nursing care for Antonio. A thought just popped into my mind, like, ‘Wait, maybe that could be me.’”

The day that decision became final, Kalynn left her job at the NICU and accepted a nursing job with Antonio. It was also the day she found out she had cancer. 

Now, Kalynn and Antonio take care of each other in many ways. She meets his medical needs, and he fills up her heart.

She said she’s like a proud grandparent, in awe of Benny and her family and all they’ve been through. 

“Breanna is an incredible sister,” Kalynn shared. “She’s been his sidekick for a long time, even learning how to suction him to help out. And Antonio is so smart,” she continued. “His condition does not impact his brain at all, and I swear he’s better at technology than I am. He loves electronics, Spiderman, and swimming.”

The latter is what led them to Chive Charities. Antonio had been doing a year of hippotherapy when he and Kalynn experienced a traumatic event. 

She volunteered that day as a side walker, walking next to Antonio, who was on horseback. A different person was leading the horse, but Antonio was smiling and laughing so hard that she turned around to look at him. In that brief moment, the horse got spooked by a nearby therapy pool and reared up, knocking Kalynn and the other volunteer to the ground. Then the horse bucked again, throwing Antonio from the saddle.

“Thankfully, the helmet did its job that day,” Kalynn explained. “His head and neck were protected, but he ended up needing stitches in his upper lip. Benny decided to hold off on more equine therapy until he could show us that he wanted to go back.”

Given his love of water, aquatic therapy seemed like a great alternative. Before the accident, Antonio had made a lot of progress on horseback, and the curvature of his spine had decreased. They were hoping he wouldn’t face much of a setback.

Through the donations of our incredible Green Ribbon Fund members, Chive Charities funded the cost of 32 aquatic therapy sessions for Antonio for a total of $7,200.

“We’re so grateful because that therapy will help him build a stronger core, decrease the curvature of his spine, and improve arm movement,” Kalynn said. 

That’s huge, especially because Antonio is about to face a series of procedures, including having the stoma from his tracheostomy sewn shut. That’ll require some airway reconstruction, so he’ll be in the ICU for a while afterward. Then, because Antonio was born with severe bilateral club feet, he needed serial casting and a tendon transfer performed again.

“He will have the ankle/foot surgery with long leg casts (over the knee) with no weight bearing for six weeks,” Benny told us. “Plus, try to attend second grade!”

“The poor little guy is going to go through a lot,” Kalynn said. “But thanks to Chive Charities, he will have the needed aquatic therapy before his surgeries to build him up and help with recovering after being in casts for nine weeks.”

“The money from Chive will mean he will get therapy from the get-go so he can hopefully have a speedy recovery.”

We all have people who come into our lives unexpectedly but who have a big impact, just like Benny and Kalynn. One minute, you’re strangers. The next, you’re family. 

Sounds a lot like Chive Charities recipients and the donors like you who support them. Become part of it and DONATE HERE.

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