We’ve all had things happen to us that left us wondering why it was happening. From the mundane and inconvenient to the profound and life-changing, asking “why me?” seems to be a rite of passage in this life.
A few years ago, Nikkita was wishing that wasn’t the case.
It started with the birth of her second son, Austin, on January 29, 2011. Nikkita had a routine pregnancy and her baby was born full-term at forty weeks and one-day gestation. A quick-acting labor and delivery room nurse immediately heard a wheezing noise accompanying his breathing called stridor. He was transported by helicopter to the closest children’s hospital in Jackson, MS and they determined that he had a collapsed airway.
For five days straight, Austin had several tests to find the source, but everything came back negative.
“During small talk with a NICU nurse, I mentioned that I’d had an older son who had received care at the same hospital,” Nikkita told us. “He was treated by the children’s hospital after a hypoxic brain injury stemming from a routine circumcision at two weeks old. He had passed the year prior at the age of five, and the nurse relayed that information to the doctors who pulled his medical records, with my consent,” she said.
“The doctors ran some of the same tests that had been run on my oldest son. And now, all of a sudden, everything was coming back positive or abnormal.”
Here is a mom who has already suffered an unimaginable loss with the death of her child. Now, her newborn son is in critical condition and undergoing the same tests as her older child. She began to wonder why this was happening to her - and why this was happening to her children.
After a long and grueling 47 days in the NICU, Nikkita and Austin were finally able to go home and wait for the genetic testing results to come back, something medical experts warned could take three months or more.
Five months later, they had no results and Austin started bleeding from his trach. He had developed severe pneumonia in both lungs and was not expected to live through the summer.
Austin received a life-saving blood transfusion and spent numerous weeks in the hospital, but despite what the doctors told her, Nikkita’s son did survive the summer.
More than six months after he underwent genetic testing, the results came back. Austin was diagnosed with the most severe form of a rare genetic disorder called Pelizaeus-Merzbacher Disease (PMD). The disease is so rare, Chive Charities has never provided aid to an individual who has it, and rare medical recipients are at the core of all we do.
With this disease, it was likely that Austin would never walk, talk, sit up, or do anything on his own with full dependency on his caregivers at all times. Nikkita was told that his life expectancy was childhood and that few people with the severe form of PMD live to see adolescence. She was also told that it was extremely likely that her oldest son had the diagnosis, but given that he had already passed, there was no way to confirm.
“It took a little bit of time, but I went from thinking I was cursed to thinking I was blessed,” Nikkita tearfully told us. “I went from asking, ‘Who am I to have this happen to me?” in a negative way to “Who am I to be the chosen one who gets to raise this child?’”
It’s been 10 years since he was first diagnosed and life looks a little different now. It’s true that Austin is fully dependent on his mom and nurse for his care. It’s true that he might never walk, talk or sit up. There was even a four-year stretch in there where Nikkita didn’t sleep for more than an hour at a time because she was so worried about her son. But Austin never doing anything on his own? No sir, no way.
Austin uses a special device to help him communicate and is best described as “calm, cool, and goofy.” He really enjoys going to school, especially his interactions with the other kids.
Austin also loves to travel, keeping himself entertained on longer rides with sing-a-longs and his favorite movies while driving to the fair, circus, bowling, waterpark, aquarium, zoo, family visits, and Disney. The latter gave him the chance to meet Elastigirl from The Incredibles and she talked with him for almost 20 minutes, giving Austin her complete and undivided attention.
Have you ever seen a smile this big?
But even this world traveler could use a little help to keep his love of travel alive. Austin recently outgrew his car seat - and all other potential car seats - which has obviously made it difficult to transport him to his favorite places, let alone to necessary medical appointments.
In a time where a car ride is about the safest way for him to get out of the house and into the world, Austin is in dire need of a better alternative.
It would have been easy (and understandable) for Nikkita to feel discouraged and ask herself why this was happening. But she learned long ago that asking that question doesn’t get you anywhere. Doing something about it does.
“I’ll be honest with you, I did not want to drive a minivan,” she laughed. “But I eventually realized it was the best option for Austin and his needs and I made myself get over it. We’ll make it look pretty good, I think.”
Like so many rare medical families, Nikkita also knew she couldn’t afford the high cost on her own. That’s when she found Chive Charities, and we’ve been making minivans cool since 2012. We wouldn’t let her down.
Our community of supporters - whose donations range from $5-$500 or more each month - stepped up in a big way and got this family the coolest minivan they could find from our partners at AMS Vans for a total impact of $39,720.
Austin already has his sights set on his next trip to Morgan’s Wonderland, an ultra-accessible theme park in San Antonio, Texas. Because of generosity from donors like you, that trip isn’t just a dream for him, it’s just a matter of time. Plus, he’s a big brother now and needs to show his sister all that the world has to offer.
We all ask ourselves that question. If you’re not already a Chive Charities donor, you’re probably wondering how much of an impact you, as an individual, can have on the lives of others. It’s easy to understand. Nowadays, $30 can barely get you and a friend food delivery. But at Chive Charities, we use an average donation of $30 to change the lives of rare medical, veteran, and first responder recipients...already more than 420 and counting, Austin included.
It’s all because of a dedicated family of donors who help make the world 10% happier. Why me? Why not you? DONATE HERE.