Xxion Shaw is almost three years old and has finally gotten to spend Christmas at home this year, instead of in a hospital. The St. James community has taken the Shaw family under its wing to help make the season even more memorable.

Wesley and Candee Shaw took custody of Xxion when he was born and spent the first 30 months of life fighting for survival, with more than 24 of those months spent in the hospital. Last Christmas, the family was advised by their doctors to prepare for the worst and start planning his funeral.

The couple currently has full permanent guardianship and custody, and is in the process of adopting.

“He was born addicted, and he got a subdermal hemorrhage and multiple brain bleeds — they were nonaccidental,” said Candee Shaw.

They were able to bring him home after he was born, but at two days old, he stopped breathing.

“...I woke up and he was not breathing, he didn’t have a heart rate....,” Shaw said. “I got him back to breathing. We got the ambulance there, and we took him to the hospital. They said that he was just having abnormal, like, newborn breathing, which was not right.”

A healthy newborn should have an oxygen level of 95 percent to 100 percent, but should stay above 90 percent. Xxion wasn’t even over 80 percent, and the doctors didn’t know what was wrong at the time.

“He couldn’t suck. He just cried. He shook really bad,” Shaw said. “...Our doctor asked us to go to Springfield Hospital.”

Once they arrived at the hospital, it was discovered that Xxion had hemorrhages that had occurred within the first two days of life. Candee Shaw had noted that before they were transferred to the Springfield Hospital, Xxion had started to turn blue, his eyes were rolling up into his head and he was shaking.

Springfield Hospital doctors verified that he had suffered a nonaccidental trauma to the brain and was going through withdrawal.

While treating the withdrawal symptoms, Xxion still couldn’t suck and started to have seizures, so the hospital transferred them again to St. Louis for advanced treatment.

While not even reaching the age of three, Xxion has received over 78 diagnoses, the biggest being his bad airways.

“So he has Laryngomalacia, tracheomalacia, and bronchomalacia. He has severe sleep apnea, and it’s due to...the damage that was done to his brain,” Shaw said.

He has a genetic disorder where his tongue, because it is too big, clamps off his airway anytime he raises his head, which causes him to quit breathing. 

“So, he quits breathing 466 times an hour in his sleep and...we have him on support now, so it’s not as bad, but....We’re in the middle of trying, like they want to trach him, but they know [if] we trach him, that we’re going on the vent for the rest of our life,” Shaw said.

Trach is short for a tracheostomy, which is a surgical procedure where surgeons make a hole through the front of the neck and into the windpipe–the windpipe is also known as the trachea. They place a tracheostomy tube into the hole and allows to keep it open for breathing.

She doesn’t want to try that path until it’s absolutely necessary.

His heart is enlarged, and he has a neuro disability. He is unable to walk, crawl or eat on his own. If he were able to swallow, it would go to his lungs, so he is given a medicine to control his spit so he doesn’t aspirate. He eats through his intestines because anything that would go to his stomach would travel up through the airways and cause him to aspirate.

Xxion also has a rare genetic disorder called Fumarase Deficiancy which mainly affects the brain and other parts of the nervous system. 

“So in order for them to say that he would pass away, like, by the time he was three, he has to have two variants. We don’t have DNA from mom or dad. We have DNA from grandma and grandpa,” Shaw said. 

Candee Shaw said she is Xxion’s paternal grandma. The doctors did the DNA testing and one variant came back, but Xxion’s biological parents aren’t involved, so they don’t have DNA from either one.

“They submit the one variant. Like, we’re seeing a lot of things like he can’t gain weight....He’s 20 pounds, and he’s gonna be three. So we’re having, like, lots of issues and just other things,” Shaw said. “And it’s just now starting to progress. We’re starting to see, you know, side effects to this genetic disorder.”

Through Washington University’s Undiagnosed Diseases Network, Xxion’s DNA is being tested to see what’s going on and to find out if there is a cure. 

“Right now, the genetic disorder he has is very rare,” Shaw said. “There’s less than 300 people in the whole world, and none of them have lived to [be] adults....Like early teenage, early adult, like, maybe a couple.”

This illness is terminal: it takes over all the vital organs. At the moment, Xxion’s kidneys and liver are good, but he does have some heart issues. He also has dystonia, which is a movement disorder, typically the cause of a neurological disease, that causes muscles to contract, resulting in muscular spasms and irregular posture.

Candee Shaw explained it’s like going in a circle. He gets to come home, catches a virus and is sent back into the hospital.

“...We get to come home for like one day, and then we go right back in,” Shaw said. “...He’s never got to see Santa other than, like, at the hospital in the door because they couldn’t come in, and he’s never experienced Christmas other than in the hospital.”

The Shaw family is very thankful for the support of their community. They have received donations, and the town came together to purchase, not only gifts for Xxion, but also gifts for his five older siblings.

St. James also held the St. James Community Parade on Dec. 23 to bring Xxion some Christmas magic. A total of 321 vehicles from local and surrounding counties came out to wish him a Merry Christmas as they drove past the Walker Pavilion and waved to him. Afterwards, many participants and spectators gathered at the pavilion to personally meet Xxion.

“So this is a blessing to us. A blessing. We’ve never experienced anything like this,” Shaw said. “...And I couldn’t ask for anything different. It’s amazing.”