Brothers Zach Frey and Joshua Graves nestle close in an oversized recliner, rubbing noses as a Disney video plays on the television.

“I love you, Zachie,” Joshua says. “Do you love me?”

Teri Frey rubs noses with her 11-year-old son, Zach Frey, as her 14-year-old son, Joshua Graves, looks on. Recently Teri has learned Zach has just weeks to live, and she carries the weight of covering funeral costs as she tries to spend time with her family.

Zach can’t answer with words he’s never been able to talk but Joshua, 14, knows the feeling is mutual. What he’s not sure about is how he’ll handle it when his little brother dies.

At 11 years old, Zach has lived 11 years longer than doctors thought he would. But his swollen feet and tiny purple toes are signs that a chromosome defect that has plagued him since birth, causing a host of other health problems, is wearing his heart to a halt.

“I think moms have instincts,” Graves said. “His birthday was July 1, and I just knew it was going to be his last.”

On Friday, Zach’s doctor confirmed his mother’s fears, guessing the boy had a few weeks left to live.

Now Teri Frey, a single parent, is beginning the heartbreaking process of picking out a casket, choosing a headstone and planning a service for her son.

Because Zach was born with his ailment, Frey never was able to get life insurance for her son. Both he and Joshua, who has cerebral palsy and epilepsy, are on Medicaid. Frey herself suffers from fibromyalgia and supports her sons with disability compensation. So her friends have organized a memorial fund in Zach’s name at First State Bank & Trust to help pay for the boy’s funeral expenses.

“He’s the sweetest kid,” said Heather O’Neal, a friend who set up the account. “He’s just a good boy. He was only supposed to live two days, but he’s lived 11 years.”

Overcoming odds

When Zach was born with truncus arteriosus, a congenital heart defect, doctors told Frey her baby had just days to live.

But Frey put her son on an infant heart transplant list and, when he was 16 days old, he got a new heart.

That was just the beginning.

Zach’s body seemed to accept the heart, but he began having troubles with his trachea and stomach. He couldn’t keep food down. He had several surgeries.

It wasn’t until Frey moved from Denver to Lawrence, when Zach was 5 years old, that a doctor told Frey he suspected her son had a chromosome defect. A specialist at Kansas University Medical Center diagnosed Di-George Syndrome, a disease caused by the absence or incomplete development of the thymus.

“I finally had an answer,” Frey said.

Doctors told her DiGeorge had been the root of Zach’s maladies. It also explained his unique facial structure, his autism and the fact that he never had uttered a word.

Despite those difficulties, Frey sent Zach to Hillcrest School, where he worked with a paraeducator whom he followed to Sunflower School last year.

“All of the kids adore him,” said Frey, who’s considering taking Zach to school so his friends can say goodbye.

Facing the end

But he won’t be there to attend classes. He’s too uncomfortable now, Frey said, and she couldn’t bear the uncertainty of sending him away during the day.

“My biggest fear is that he wouldn’t be with me when it happened,” she said.

Two years ago, when Zach underwent treatment because his body was trying to reject his heart, Frey helped him through the grueling pain but promised him she would never make him live through it again. No resuscitation, no extraordinary measures next time will be the last time.

“I said no more poking at him,” Frey said. “I just want to let him live with as much quality of life as he can. And when God’s ready to take him, he’ll take him. It’s hard because he’s my baby, and I love him. I want to keep him here, but I have to be selfless and let him go.”

Zach’s doctors at KU have contacted Hospice Care, and Zach should begin getting in-home visits soon.

He climbs into his mom’s lap, his favorite rubber snake in hand, and rests quietly against her.

“Such a tender little soul,” Frey said. “I definitely think God brought him to teach me instead of the other way around.”