What started as an outing to a Virginia Tech event blossomed into the mutual love between a young girl with a rare disease and the Virginia Tech sports community (aka the Hokies).
The Hokie Nation has rallied around their 12-year-old super fan Dani Jo, who lives with the challenges of congenital central hypoventilation syndrome (CCHS).
But Dani Jo proves a mighty heart beats in all types of bodies!
What is CCHS?
Congenital central hypoventilation syndrome is a rare disorder that affects the central and autonomic nervous system, which controls many of the automatic functions in the body (e.g. heart rate, blood pressure, bladder and bowel control).
The most recognized symptom of CCHS is the inability of patients to control their own breathing due to a dysregulation of the respiratory drive. This inability varies in severity, but usually, patients experience the most reduced and shallowest breathing during non-REM sleep.
In addition to the hallmark respiratory problems of CCHS, patients may also have cardiac problems, such as cardiac asystoles (heart stops beating), heart rate variability, altered blood pressure regulation, poor circulation. Digestive problems and ophthalmological problems may also occur.
To learn more about CCHS, click here.
Dani Jo ♡s The Hokies
For Dani Jo, life takes certain extra steps.
For example, she’s required to hook up to a ventilator when she sleeps.
“I wear it because if I fall asleep without it I will die.’
And the truth is, she’s not exaggerating.
“Part of her brain shuts down the second she falls asleep and you have about 30 seconds to put her on a ventilator or she dies,” said her father Joey.
So when basketball season rolls in in November, Dani Jo is able to focus on something other than her medical issues; proving just how special her bond is with the Hokies.
And things really took off when Dani Jo and her family made the trip to Blacksburg (home of Virginia Tech) to an event for kids with special needs. There she met former Virginia Tech guard Devin Wilson — and her love for the Hokies blossomed.
“She would come to games with her dad and her sisters, they would sit right by where we warm up at, and tell one of the managers to come and get me,” Devin said. “I would always walk over there and she’d show me a picture she drew or a picture of me or a picture of her and her family, anything from that, and we’d always take a picture from the game and it kind of just built from there.”
With an assist from Devin’s affection, Dani Jo and her family opened up a Twitter and stared cultivating a following.
This is not only a welcomed distraction from some of the day-to-day stresses of managing CCHS; but a great outlet to show her love for something that makes her happy.
“The thing that she is here to do is to show people that whatever it is you’re going through, you can overcome it,” Joey said. “I get a front row seat to that every day and I can’t think of anything better in life than the opportunity to see that every day.”
Click here to follow the family on Twitter!
