“Prior to Levi’s diagnosis, life was stressful and hectic but not as crazy,” said his mom, Crystal. “He has two siblings with epilepsy, autism, developmental delays, intestinal tubes, and hearing impairment. 

“Levi was born with his conditions, but we didn’t know about them until one horrible night when he was six weeks old.”

It was the middle of the night, just shy of 2am, and dark and quiet. Crystal was nursing Levi, taking in all the wonder of his tiny face and delicate lashes. But as she looked closer, she realized his skin color wasn’t quite right – Levi was turning gray. 

She jumped into action, clicking on the lights and calling 911. He was rushed to the hospital where doctors determined that Levi had aspirated while nursing and stopped breathing.

“They assured us it was a one-time thing,” said Crystal. 

It wasn’t.

For the first 10 months of his life, Levi was in and out of the hospital. Any time he was moved, like being carried from his crib to the changing table, or shifted from his high chair to the living room, Levi stopped breathing. It was slight, an almost imperceptible change in his breath, but Crystal noticed that something wasn’t right. 

At an appointment for his sibling, the doctor turned to Crystal and motioned toward Levi who was sitting off on the side. “How long has he sounded like that?” they asked.

Levi was making a noise that sounded like a bull snorting. It’d been happening for a few weeks, but seemed to be getting worse. The doctor was concerned enough that they recommended he do a sleep study. The results were unbelievable. 

Levi was below 80% oxygen for 80% of the night. 

For the average person, a normal blood oxygen level, even while asleep, would be 95-100%. Levi’s oxygen saturation was so low, he was at risk of brain damage. Doctors told Crystal that Levi stopped breathing anywhere from 22 to 44 times an hour.

Doctors placed a tracheostomy tube almost immediately after the results were in, and Levi soon went on a ventilator for his apnea and to help him breathe.

“That’s when I started doing my own research,” said Crystal. “After he got the trach, he stood up in the crib and had never done that before. It was like he had been struggling for so long to breathe that once that challenge was removed, he was a different baby.”

Things were going good – though still hectic as ever with four kids – until Levi approached his first birthday.

Levi was asleep when he experienced a six-minute-long seizure. Crystal had to provide rescue breaths for her son and has either bagged him or performed life-saving CPR many times throughout his life.

The trauma of seeing your son stop breathing and knowing your actions alone could keep him alive until emergency personnel arrived is hard to explain. Crystal has lived through it more times than she cares to remember. 

Around that point, Levi was 16-17 months old and his condition and symptoms had progressed well beyond apnea or breathing difficulties. The seizure changed a lot for him, and it marked the beginning of a new chapter of his life – of all their lives.

Along with numerous other medical diagnoses, it was determined that Levi has congenital central hypoventilation syndrome (CCHS), a rare condition that causes shallow breathing during sleep, among other things. He also has laryngomalacia (a softening of the tissues of the voice box above the vocal cords) and epilepsy. 

Today, Levi requires a tracheostomy, ventilator, and feeding tube, and wears kafos (knee-ankle-foot orthotics), and uses a power wheelchair for mobility. 

“Levi is a 24-hour care kid so someone has to always be awake to care for him,” explained Crystal. “He sees 10 different specialists, all 2-3 hours away from our home. He’s on 14 different medications and is only allowed 10-15 minutes of outdoor play due to the risk of overheating. His epilepsy can result in seizures up to 8 minutes long, and he gets breathing assistance 14 hours each day. He also does five different therapies each week.”

To say they’re maxed out right now would be an understatement. Remember, Levi is one of four, and two of his siblings also have rare genetic disorders, including his oldest brother who has DiGeorge syndrome. 

To further complicate things, Crystal hasn’t had the support of home nursing care for the last 18 months. The 24-hour care Levi requires has just become part of her normal routine, sleep be damned. 

“Levi is so special, though. He’s got a big personality and is the life of the party!”

Crystal explained that Levi is well-liked and fun to be around, always lighting up the room with his infectious personality. He participates in special needs sports, including baseball and gymnastics, and he absolutely loves wrestling, superheroes, and comic cons. 

He’s eight years old now and getting bigger and stronger every day. The odds were against him, but he didn’t pay attention to them.

“Levi's diagnoses are degenerative and unfortunately we don't know how long it will be but he will progress and worsen throughout his life,” Crystal explained. “We’re just grateful for every moment we get with him.”

If you’ve made it this far in the story, it’s pretty clear that Crystal was in desperate need of some support. This was way too much for one person to juggle, and she was managing it with four children, all by herself. 

With Levi’s power wheelchair, transportation is beyond difficult, and he’s not the only person in the family who requires mobility assistance. 

“I’ve had to choose between Levi and his sibling to determine who was able to leave the house because I can’t take them both at the same time,” Crystal told us. 

It’s unfortunate that we don’t have a system in place to support more families like Crystal’s, but that’s why Chive Charities exists. We’re here to fill the gaps where insurance and other resources cannot. So, if Crystal needed reliable transportation to accommodate four kids – and two wheelchairs – that’s exactly what we were going to provide. 

Through your generous donations, Chive Charities proudly funded a 2017 Ford Transit for a total impact of $64,349. 

Levi is too fun with too big of a personality to be relegated to his house. That infectious smile and palpable joy need to be out in the world, lighting up the lives of all those lucky enough to meet him.

Today, donors like you helped make that more possible. And for Crystal, the supermom holding it all together, this van is one less burden to carry on her shoulders. 

Thanks for making it possible. Thanks for changing more lives. Thanks for making the world 10% happier. Be part of it with us and DONATE HERE.