By reaching age 1 with his kidneys still functioning, Shafer Daves has already exceeded his doctors' expectations, his mother said.
One year ago, Shafer was lying swollen and intubated in the pediatric intensive care unit at T.C. Thompson Children's Hospital. Complications related to an extremely rare disease made doctors unsure whether he could survive infancy. They expected his kidneys to shut down by 3 weeks old, recalled his mother, Jada Daves.
"I felt like I couldn't breathe. I remember saying I felt like I could never have joy again. I was watching my son die," said Daves, who lives in East Brainerd with her husband, Kevin, and five children.
But Shafer has defied doctors' initial predictions. His kidney decline slowed after a few weeks, and early illnesses cleared up. Shafer has grown stronger over the past few months, despite multiple surgeries to treat complications of his disease, and he now has a chance to get a kidney transplant that will hopefully add 20 years to his life.
His family and more than 80 friends celebrated his first year of life this month at Coolidge Park.
"I think a lot of people envision a baby tied up to tubes. We've had that, we've been there, and we've wept bedside, but we're not there right now," she said. "Shafer is alive and well, and that is absolutely a gift. We're gonna walk through this thing with faith and we're just gonna hang on for the best."
Shafer has Denys-Drash Syndrome, a disease caused by a genetic mutation and marked by rapid decline of kidney function and progression to end-stage renal disease, usually within the first two to four years of life, his doctor said. The majority of those with the syndrome will also develop cancerous tumors on the kidneys, known as Wilms tumor.
Since the disease is very rare, incidence data is hard to come by, said nephrologist Kathy Jabs, who treats Shafer at Vanderbilt Medical Center.
The syndrome has been reported in more than 200 cases worldwide, but more cases certainly exist, she said.
Shafer still has 40 percent kidney function remaining, although that success is now putting the family in a stressful holding pattern, Daves said.
To be eligible for a transplant, Shafer's kidney function must first dwindle to 10 percent. If Wilms tumors develop before then, chemotherapy treatments would prohibit the transplant procedure for up to two years, his mom said.
"It's just a very hard place to be right now. It's very scary," she said. Shafer is getting scans regularly so that any tumors can be caught early, she said.
One of the hardest things for the family is when Jada Daves must leave her other four children to travel to Vanderbilt for surgeries or other treatments Shafer requires, said family friend Shari Stone.
"It just tears your heart up to see," she said. But, she added, "I just know God's hand is on Shafer. Kevin and Jada, I've seen them grow through this and use their testimony to touch a lot of people."
Shafer's care over the past year has cost about $235,000, the bulk of which has been covered by the Daves' United Healthcare policy, Daves said.
This month, family friends organized a fundraiser to help the Daves offset their still-enormous out-of-pocket expenses. The event raised $14,000, said Daves, a motivational speaker by trade. She recently began working again one day a week, after taking a year off to care for her son full-time.
The Daves have been overwhelmed by the generosity of friends, casual acquaintances - even strangers - who have pulled together to help offer support, provide meals and rides to school for the Daves' other children, who range in age from 3 to 9.
"It humbles you," Daves said. "There is no end to what people did for us."
A planner by nature, Daves said she's had to learn to accept uncertainty and to live in the moment.
"This is a daily journey. We pray for strength today," she said. "We've got a beautiful story, even if God chooses to take Shafer. We have to accept whatever is next. But we're gonna fight this thing to the very end."
The Daves have a First Volunteer Bank account - account number 104638304 - that accepts donations to assist with Shafer's medical expenses.