Faith Dorning, 2, hangs on to the outside of her play at her home in Rochester on Thursday.
Andrea Dorning, left, encourages her daughter, Faith, right, to walk towards her as her seven-year-old daughter, Savanna, looks on Thursday at their house in Rochester.
Faith Dorning gives her mother, Andrea Dorning, a skeptical look as she cleans off a sucker for the two-year-old at their home in Rochester on Thursday afternoon. Faith, who was born with a rare recessive kidney disorder, received a kidney from her mother last August.
The Dorning Family poses for a portrait in the living room of their Rochester home on Thursday afternoon. From left: Savanna Ridley, 7, Dan Dorning, Andrea Dorning, Faith Dorning, Tristan Ridley, 9.
With sucker in mouth, Faith Dorning hangs out around the house on Thursday in Rochester. Because of a rare kidney disorder called autosomal recessive polycystic kidney disease, ARPKD, the two-year-old has already gone through seven surgery including a kidney transplant. Faith's mother, Andrea, donated her kidney to her young daughter in August.
Faith Dorning, 2, plays outside of her playpin in the living room of her house in Rochester on Thursday.
Faith Dorning peaks over the railing of her play pin at her house in Rochester on Thursday afternoon.
Faith Dorning inspects a sucker she got from her brother Tristan, 9, at her house on Thursday afternoon in Rochester.
A hand-printed sign on the front door of Andrea and Dan Dorning’s Rochester home asks visitors to remove shoes and wash hands upon entry. Inside, tiny Faith Dorning greets visitors with a sunny smile as she cruises the room, supporting herself on nearby furniture. Faith is the reason for the sign on the door.
At 2 years old, Faith Dorning is the veteran of seven surgeries including a kidney transplant. She has a rare kidney disorder called autosomal recessive polycystic kidney disease (ARPKD).
According to the National Institute of Health, ARPKD affects about 1 in 20,000 to 40,000 people. As many as 50 percent of infants diagnosed with the disorder die at birth or shortly thereafter. The recessive gene that causes ARPKD must be present in both parents.
“Nobody in either family has ever had kidney disease,” says Dan.
Andrea adds, “It was a total shock.”
At the time, the Dornings were newlyweds with a combined family of three children. Andrea was in her sixth month of pregnancy when they learned their unborn daughter had the rare condition. An ultrasound showed a low-lying placenta requiring a follow-up sonogram in a few weeks. When subsequent ultrasounds revealed low levels of amniotic fluid, doctors sent Andrea and Dan to Mary Bridge Pediatric Specialty Clinic in Silverdale. There, they received the devastating news their unborn daughter had ARPKD.
Doctors at Mary Bridge were frank with the Dornings, warning them there was only a 5 percent chance the baby would survive until birth.
“It was a quiet ride home,” Andrea says. “We didn’t say a word for the entire two-hour drive.”
In her blog, A Book of Dorning’s Faith, Andrea describes the torment of the next few months as the family struggled to come to terms with the baby’s prognosis. It was during that time the perfect name came to Andrea.
“I was lying in bed,” Andrea says. “I didn’t want to get up or eat anything. I just stared at the wall. Then her name came to me. I knew Faith was perfect for her. It was totally fitting.”
Defying the odds, Faith was born at Tacoma General Hospital on a snowy day in late February of 2011. Medical personnel immediately whisked her away to the neonatal intensive care unit.
“She was a fighter,” her mother says in awe.
Since her birth, Faith has beaten the odds repeatedly, although it hasn’t been an easy road for the Dorning family. Her long stints in the hospital have kept Faith and Andrea far away from home, something that has been particularly difficult for Andrea and Dan’s other children Tristan, Jordan, and Savanna. During each of Faith’s three month-long hospitalizations — first in NICU, next for hemodialysis, and then for a kidney transplant — Andrea stayed nearby while Dan kept things running at home.
“There are lots of times you feel guilty,” Andrea says about time spent away from her children.
Dan nods in agreement adding, “You sometimes have to ask yourself when enough is enough. How do you weigh saving your child’s life with the pain it causes her and the cost to your other children?”
Fortunately, the couple relied on each other and a large support system of family, friends, and church.
“We took turns being strong,” Andrea says.
Dan adds, “When I was struggling, Andrea would say, ‘hey – it will be all right,’ and I did the same for her.”
When it became apparent that Faith needed a kidney transplant, the couple hoped Dan would be able to serve as a donor. While he wasn’t a match, Andrea was. After hours of tests and months of waiting, Faith received one of Andrea’s kidneys on August 22, 2012.
The recovery process has been slow for Andrea. She still struggles with lower energy than normal, but Faith has thrived.
“It’s amazing how much she’s progressed since the transplant,” Andrea says. “She’s made more progress in the past six months than she did in two years.”
Currently, Faith’s physical development is that of a nine-month-old, although eventually she will catch up to her peers.
According to Andrea, Faith currently takes 10 different medications. These include the anti-rejection drugs that suppress her immune system. While she will always need to take the anti-rejection medications, Faith’s parents plan to allow her to live as normal of a life as possible.
“We don’t want to put her in a bubble, although it’s kind of hard not to,” Andrea says.
Dan adds, “I don’t want to limit her. I want her to do everything she possibly wants and live her life as fully as she can.”
As the Dornings talk, Faith cruises the room like any other toddler, giving hugs along the way. To her family and their friends, she is the living embodiment of the power of faith.
Karen Frazier is a freelance writer and author. She lives in Chehalis with her family.
