MOUNT CARMEL - Baby Tyrion is ready to be fed, and like many babies, the 10-month-old appears cranky ahead of his meal.
He's crying and fussy, and his parents' attempts to placate him aren't working.
But to believe that Tyrion is simply cranky is to not know his condition, one that brings about fits of seizures and has left him unable to develop the strength to lift his own head. It's a disease that could require round-the-clock care for the rest of his life.
Tyrion suffers from schizencephaly, the ramifications of which caused doctors to advise his parents, Ashley and Lee Patrick, to consider terminating the pregnancy. Even inside the delivery room of a North Carolina hospital, the couple says medical staff told them the outlook for their son was grim.
"'I will miscarry. It will be a still birth. Don't expect him to live long after he is born. Don't expect to leave the hospital with your baby,'" Ashley, 22, says she was told leading up to her son's birth last May.
"Then it was, 'Well, you won't have too long with him after he's home.'"
The couple moved to Mount Carmel late last month because of its proximity to Geisinger Medical Center, Danville, and also because of its low cost of living.
Inside Tyrion's room in the family's apartment, Ashley and Lee work together to set up a feeding tube. The tube is attached to a bag and a plug surgically implanted into Tyrion's stomach, and his body stiffens uncontrollably - his back arching and his limbs fully extending.
His persistent crying - which continued in this case for about a half an hour, a result of his condition - is interrupted by a deep breath. Several moments pass - a half-minute that drags uncomfortably long - before he exhales and lets out a few more short cries, finally seeming to relax.
The scene is jarring, but for Tyrion's mom and dad, it's nothing out of the ordinary.
"Oh, he's been doing it since he was born," Ashley says while sitting on a loveseat, her arms cradling her son.
Little development
Schizencephaly is an extremely rare brain disorder that stymies development of a baby's physical and mental makeup.
At 10 months old, Tyrion does little more than roll his head from left to right, but he doesn't have enough muscle mass to allow him to hold his head up on his own. His eyes wander, too, unable to remain focused.
He's prone to seizures, and he's on medication to control them. He suffers from another disorder, hydrocephalus, which causes the buildup of brain fluid. For that, a shunt has been surgically implanted to allow the excess fluid to be absorbed into his abdomen.
He has had little to no mental development, and his long-term prognosis remains unclear. The Patricks are preparing for the worst.
"We call him our living doll. I hate to say it that way, but that's the best way to put it," Ashley says.
"He's projected not to do anything," says Lee, 23, while acknowledging every case is different and the projection could prove wrong.
"He'll be wheelchair-bound more than likely, and dependant on someone for the rest of his life; he'll be non-verbal, non-communicative. As far as the eyesight, we don't know yet, but more than likely he'll be blind," Ashley says.
Diagnosis
The Patrick's courtship was one that moved quickly.
Lee, who was adopted, grew up in Ohio. "I always wanted a son because I never had a father of my own," Lee says.
He is now a lance corporal in the U.S. Marine Corps, 4th Combat Engineers Battalion, based in Baltimore.
He met his wife - a resident of Washington, D.C. - online in 2010 and soon after discovered they had mutual friends. Both were living in the nation's capital at the time.
In July 2010, just three weeks after they'd met, they were married. Two months later, Ashley was pregnant.
At 22 weeks, an ultrasound found something wrong with their baby's brain. Just a few weeks before her Ashley's due date, Tyrion's diagnosis was made. Doctors believed he had suffered a stroke while in the womb.
When presented, the idea of an abortion was quickly dismissed, they say.
On May 21, 2011, Tyrion was born. He weighed 8 pounds, 14 ounces and was 22 inches in length.
Warm welcome
The couple found Geisinger through relationships created with others on an online support network for parents of children with neurological disorders.
They knew no one in Mount Carmel when they moved to the borough last month; no family, no friends. They brought with them clothing, a play pen and little else.
Their apartment came way of Realty World. When employees of the borough realtor learned of the Patricks' plight, they stepped in to help.
A futon bed, dressers and other furniture were rounded up, as were baby supplies. They also scraped together a substantial donation, some of which was used to buy Tyrion a crib.
Both were overwhelmed by the show of support.
"I'm from D.C. You just never hear of this," Ashley said.
"We didn't think it, we didn't expect it, we didn't ask for anything," Lee said in expressing his thanks.
Lee is scheduled to head to a base in Baltimore and on to Missouri for retraining in the coming months. In the meantime, he's found work. Ashley is still looking for a job. She's certified as a phlebotomist and hopes one day to become a registered nurse.
Long road ahead
Tyrion has at least three scheduled appointments at Geisinger this month. The Patricks say they expect him to be at the hospital more frequently as he grows older.
Ashley counts on her fingers as she rattles off the types of specialists her son has been seen by - neurosurgery, neurology, ophthalmology, neuroophthalmology, orthopedics, special needs nutrition, gastroenterology, kidney specialists, genetics specialists, developmental pediatrics and an epilepsy specialist.
Physical therapy will be performed at their home. The couple is awaiting seven-day-a-week nursing service, with nurses likely visiting overnight and allowing the couple some sleep.
Recalling his stance on abortion, Lee admits he doesn't know what he'd do if the couple were to have a second child with such extensive medical needs.
"I understand I was a little contradictive. I'm not for it, I don't agree with it whatsoever. ... If we had two children with the same problems with different ages, I don't know how we'd deal with it," Lee says, adding that adoption could be another alternative.
The challenges presented the Patricks at their age dealing with a special needs child has admittedly created some relationship challenges and exacerbated others. At the same time, they say it can draw them closer.
"Every little milestone is a great leap for us. Some people talk about how their child's crawling, walking," he said. "He doesn't roll over, but when he does, maybe 2 years old he rolls over for the first time, it's going to be amazing for us."