Nobody tells you that in the best outcomes, you’re handed a healthy, helpless infant who is completely dependent on you, yet comes with no instruction manual. Nobody tells you that you can have a typical pregnancy up to the very end and still have a baby with critical medical needs.
Nobody tells you that if your child is born with a rare disease or complication, you’re also not handed an instruction manual - that you’re just as overwhelmed as any other new parent only with a thousand other things complicating the journey.
Six years ago, Auvonna Jordyn was born during a routine c-section to mom, Joann, and dad, Phillip. It wasn’t until later in the day that Joann felt like something was off.
“As I watched over her, I noticed something wasn’t right and immediately panicked,” Joann told us. “The nurse was walking back into the room to discuss something with me, so I shared with her what I saw. It appeared to be some type of twitch with eye gazing, but since the nurse didn’t witness what happened, she decided to take Auvonna back to the nursery for closer monitoring. They later moved her to the NICU where she was seen by the on-call neurologist. After a few tests, they thought Auvonna may have had seizures, but weren’t sure of the seriousness, yet.”
Unfortunately, or fortunately, depending on how you look at it, Auvonna didn’t have any other episodes to monitor while in the hospital, and it seemed like what happened that first day was just an oddity.
Joann and Phillip didn’t stop there, though, and began working with Children’s Healthcare of Atlanta (CHOA) to get some answers for their girl. They knew in their gut something was wrong and it was just a matter of time until they uncovered what that was.
It turns out that “matter of time” was just about a year.
Auvonna underwent genetic testing which revealed numerous diagnoses, including developmental delays, polymicrogyria, chromosome 7q36.3 duplication syndrome, and perhaps the most telling of them all: West Syndrome. This rare disease is characterized by epileptic spasms, abnormal brain wave patterns, and intellectual disability.
“Through that year, we started our journey to adjusting to life as we could under the circumstances,” Joann explained. “And it’s funny because we knew our daughter had complex medical needs and yet there was so much we didn’t know. Nobody tells you about the details - even small things like applying for a handicapped parking pass. You’re just out there trying to figure it all out yourself.”
Nobody tells you.
What they also didn’t tell Joann, Phillip, and big brother Joseph was the joy and laughter Auvonna would bring to their lives, despite all that she faced.
She’s a bright and happy 6-year-old who absolutely loves stripes, being around other people, and spending time in school. Joann told us that the first thing Auvonna does in the morning when she wakes up is smile.
And while Auvonna is non-verbal, she finds ways to communicate and express herself. If Joseph gets scolded for something, Auvonna will cry, too. She feels deeply and is truly so, so special.
And while it’s been a difficult road for this family, they continually found ways to keep showing up for each other. They took each day as it came and did the best they could with it.
But one day in 2017 changed all of that. Joann’s husband, partner, and teammate - Phillip - was tragically lost to homicide. Once again, Joann felt completely alone and isolated with no instruction manual to guide her through.
Nobody tells you how to function each day as a single mother and widow.
Nobody tells you that people will stare at your daughter when you’re out, that you’ll become used to sharing a shortened version of a journey years in the making.
Nobody tells you that you’ll need a flexible job to handle all of the appointments, therapy visits, and hospital stays - if you can have a job at all. Nobody tells you that your job of 16 years will let you go because of the doctor appointments and hospital visits.
Nobody tells you that you’ll wonder how to keep going. How to keep showing up.
Thankfully, Joann wasn’t left alone for long. She was connected to Auvonna’s current nurse (“and angel,” Joann added) named Miss Amy. This incredible support person helps Joann navigate Auvonna’s extensive medical needs and gives her the time and space to care for Joseph and his needs, too.
“It’s definitely been a rough road traveled,” Joann said, “but I love every bump along the way with my kids.”
“I’ve always been taught that God will put no more on you than you can bear. Therefore, I’m in it to win it and looking forward to the bad, the ugly, and the good to come. I am overjoyed and honored to have any opportunity for helping Auvonna meet goals and assistance in life.”
One of those opportunities came in the form of a wheelchair-accessible van, a critical component to Auvonna’s ability to gain some independence and freedom.
As Auvonna gets older, she and her equipment get bigger. Right now, that equipment includes a stander, gait trainer, wheelchair, cough assist device, compression vest, oximeter, oxygen concentrator, suction machine, nebulizer, feeding equipment, activity chair, stroller, and safety bed - all of which was supposed to magically fit inside the family’s used Toyota Corolla. Yeah, not going to happen.
When we heard this incredible family’s story - when we saw the determination and strength they demonstrate every day - we had to say yes to supporting them. Because of donors like you who always champion the underdogs, Joann, Joseph, and Auvonna just received a new 2019 Dodge Grand Caravan for a total impact of $42,035.
Yes, there are a lot of things that happen in life that nobody warns you about. We’re all going to face challenges, some of us more than others.
And yet, even in those darkest moments, you can walk into a room to wake your daughter and be greeted by the biggest smile, lighting you up from the inside out.
Nobody tells you that.
Nobody tells you that a group of strangers will step in to change everything for the better. Nobody tells you that freedom is spelled “A-D-A, V-A-N.” Nobody tells you that a community of donors can turn an average donation of $30/month into life-changing grants for 480 rare medical, veteran, and first responder recipients.
Well today, we’re telling you. Come be part of it with us. DONATE HERE.