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Gianna G.

What's in a name?

Humor us for a moment and imagine you have a loved one with unexplained health issues.

You watch as they start visiting doctors and specialists, undergoing frequent testing, poking, and prodding. Every other week, it seems, you sit and wait with them at another doctor's office, medical center, or hospital.

Referrals are made, more testing is ordered, and medical bills begin to pile up. And each time, it seems like you’re no closer to an answer. MRIs come back clear. Genetic results are normal. Bloodwork, spinal taps, and ultrasounds all appear typical. 

Doctors agree that there are obvious medical challenges, but the cause – well, that can’t be determined. They can’t give you a name or a diagnosis or any idea of what the prognosis would be. If that were the case for your loved one, would you still push to get a name? Would you still watch as they endured countless tests and procedures in the pursuit of a diagnosis?

For Gianna’s family, that answer slowly became no. “All of that just to have a name?” asked Dominick, Gianna’s dad. “No, not anymore.”

Gianna came into this world fighting. She swallowed meconium in utero and was born barely breathing. When Dominick first laid eyes on his daughter, all he noticed was her beauty. But as he took in her button nose, peach fuzz hair, and tiny hands, he also noticed that she was completely floppy and struggling to breathe, using accessory muscles to gasp for air.

“Everybody was extremely concerned because it was evident that something was going on,” Dominick explained. “She could only move her arms intentionally, and everything else was just…floppy.”

Gianna spent the next couple of weeks in the NICU, and all the medical team could ascertain was she had low tone (hypotonia) and her pupils were different sizes. They diagnosed her with Horner’s syndrome, which is typically the result of another medical condition like stroke, tumor, or spinal cord injury – none of which doctors diagnosed Gianna with. Symptoms include a smaller pupil, drooping eyelid, and little or no sweating on the affected side.

But as for her lower extremities and mobility challenges, a diagnosis remained elusive. Gianna is now four years old and no closer to an answer.

“It’s baffling because she presents as a child with a spinal injury/trauma, but after 13 MRIs, her doctors haven’t found anything conclusive other than hypotonia,” Dominick said. “She has had all genetic testing done with the only two geneticists in the state - along with both mom and dad - and those were inconclusive as well.”

“Most recently, Gianna had a muscle biopsy which was sent to Baylor Genetics, and once again, all is normal. From her breastplate up, she’s perfectly normal. Her speech, vision, and fine motor skills are exemplary. Her spine is fine. Her spinal cord is fine. But Gianna has no controlled movement or feeling in her lower trunk through her lower extremities.”

Complicating matters, Gianna lacks the abdominal muscle control to help cough or move mucus out of her lungs, so any minor respiratory issue can quickly turn into pneumonia, which has resulted in numerous hospital stays and physician-required isolation to reduce exposure. 

(To help with that, Gianna and Dominick worked with AFFLO, a company that specializes in battery-operated High-Frequency Chest Wall Oscillation (HFCWO) therapy vests that help people receive state-of-the-art airway clearance therapy on the go. She got her own custom-made vest, fit to her tiny proportions.)

But like we said in the beginning, she came out fighting, and she’s been holding her own ever since. Gianna is a typical 4-year-old girl who just happens to use a wheelchair for mobility. She loves to help cook, is passionate about arts and crafts, and is borderline obsessed with animals.

Not too long ago, Dominick relented and bought her two guinea pigs named Hershey and Hei Hei. He said the goal was to teach her some responsibility, but we imagine she might also have him wrapped around her finger just a tad.

Like most parents, Dominick would do anything for his daughter. He’s active in the special needs community and received an award from the Governor of Louisiana for coaching a team to first place in the Louisiana Special Olympics Volleyball Tournament.

He and Gianna are also actively involved in the Miracle League, a program designed to serve kids who cannot be accommodated by established baseball, basketball and soccer leagues due to the special needs of their disabilities.

“Gianna attends PT three times each week, and I have an entire room at home dedicated to her equipment, including a lite gait, gait trainer, ziczack (from MakeGood Nola), mobile stander, and multiple wheelchairs. Almost all of it has been donated, and it all helps make sure she doesn’t miss a beat.”

Even with all of that equipment and generosity from other families, there was one thing Dominick knew would help Gianna that they couldn’t afford and didn’t have access to: the Trexo Robotics system.

Trexo designed robotic gait trainers that can be used by kids with a wide range of conditions and needs, and regardless of your child’s abilities, they can walk with the Trexo. Some need the Trexo to help them build more endurance so they can better use their walker. Others are not able to sit, roll or stand, but they too can use the Trexo to walk for the first time. It’s, in a word, incredible.

Gianna excels in so many ways. She’s smart, above and beyond her age. And because of that, she’s started noticing that there aren’t a lot of other kids in her school who are using wheelchairs like her. That was heartbreaking for Dominick, but instead of letting it keep him (or her) down for too long, he started researching other things that might be able to help her.

“When I found Trexo, I knew she had to have it. The only question was how?”

We can answer that one. At Chive Charities, we take one-time and monthly donations from our donors and use those funds to directly impact recipient lives like Gianna’s. From $5 all the way up to $200 and beyond, it all makes a difference and brings dreams like this one to life.

Thanks to your support, we were able to fund the cost of a Trexo gait trainer for Gianna for a total impact of $35,223. The ability for Gianna to walk independently is harder to quantify, but there’s no doubt that it’ll be life-changing.

Dominick and Gianna might not ever get a diagnosis, might not ever have a name to explain her challenges. But they’ve come to find that it simply doesn’t matter as much anymore. What matters is that Gianna’s given every opportunity to succeed, to progress, to grow like any other kid. This incredible grant item will continue to make that possible.

Gianna might not have a diagnosis, but we still have a name for her: rockstar. Thanks to everyone who helped make this possible for her and for all the recipients waiting for their own chance to shine.

Whether they have a diagnosis or not, they know there’s one name that represents a community that’ll help when everyone else says no: Chive Charities. 

Join our life-changing impact and DONATE HERE.

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