Gifts come small and large, token and heartfelt.
This Christmas, a gift that Maddie Lea received from Frank Mestas has given her a new life.
In late November, Mestas donated one of his kidneys to the 18-year-old Bonney Lake woman suffering from Alport syndrome, a rare hereditary disease that attacks the kidneys.
The route to that moment went from fear to selfless giving and finally to hope.
‘SHE’S GETTING SICK FAST’
Kim Lea and Brenda Mestas are nurses at MultiCare Good Samaritan Hospital in Puyallup.
Like most co-workers, the women would share news of their families with each other. In January, the family updates began to turn dire. Kim’s daughter Maddie was rapidly declining in health.
“It really began resonating with me,” Brenda said.
Brenda began sharing updates with her husband, Frank Mestas.
“Boy, she’s getting sick fast,” Brenda told Frank. “They’re looking for a donor.”
Frank had never met Kim, let alone Maddie, but he was struck by her situation.
“The thought that kept going through my mind was, ‘I can help her,’ ” he said.
Frank doesn’t know why at age 42 he was suddenly compelled to help Maddie, other than divine intervention.
“It was God saying, ‘You can help Maddie,’ ” Frank said. “I told Brenda, ‘I can help her.’ ”
Frank’s blood type is O negative, meaning he is a universal donor. But it takes more than that to be a compatible organ donor. Antibodies, antigens and other factors must be tested and matched.
In March, the Lea family, which includes dad Rick and son Max, 14, went to Maui for a vacation.
“I’m trying to keep up with Max,” Maddie recalled. “He’s out there snorkeling and boogie boarding and I would get so tired.”
Maddie didn’t know how serious her condition was. But her parents did.
“We didn’t say anything to the kids,” Kim said. “We said everything is just fine.”
On the plane trip home, Maddie, sensing something was wrong, began to question her mother.
“I told her it was pretty bad and that we need to start finding a donor,” Kim said.
But as the months stretched on and Maddie’s kidneys declined, no one came forward with a donation offer.
Except one: Max.
But, at 14 years old, he was too young to donate.
Typically, when a child needs a kidney, parents rush to offer theirs, but Kim and Rick could not.
Kim has only one kidney. She donated the other to help Rick.
Rick also has Alport syndrome. The disease that was slowly killing Maddie’s kidneys was inherited from her father.
Alport syndrome leads to scarring in the kidneys and progressive loss of kidney function.
It can also cause hearing loss and eye abnormalities. The condition affects one in 50,000 people, according to the National Institutes of Health.
The disease is passed via the X chromosome. That means fathers can pass it on only to daughters. But women can pass it to either gender.
If Maddie has children, they will have a 50 percent chance of inheriting it.
Her condition progressed more rapidly than her father’s, whose disease was weaker than normal.
Rick started showing symptoms of the disease when he was 6 years old, but doctors thought he had routine kidney disease.
“They never tested him for this disease because it’s so rare,” Kim said.
Rick found out he, too, had Alport syndrome after Maddie’s diagnosis. She was 4, and he was 34.
A TURN FOR THE WORSE
As Maddie’s health worsened in the summer, she knew her plan of starting at Pacific Lutheran University in the fall would have to wait. She had her sights set on a pediatric medicine career.
“I felt like the rug was pulled out from under me,” Maddie said. “I tried to put off the fact I was sick — not accept it.”
In September, her kidneys were almost nonfunctional and she began dialysis.
“After finding out how sick I was, I lost all hope,” Maddie said.
The girl who could light up a room morphed into someone else, her mother lamented.
“She wasn’t the same person,” she said.
Maddie descended into a fog of depression.
“Thinking back how hard that was …” Maddie pauses and then begins to softly cry. But the tears turn into sobs and she seeks her mother’s embrace.
Kim picks up the story for her.
“To watch your child — this vibrant, energetic kid, be a little ball sleeping in our room because she’s afraid she’s going to die. That was hard to do. What do you do? Just sit there and hold her.”
“We were calling (the kidney center) constantly,” Kim said. “They said they had a couple of possibilities. It would just take that one person.”
That person was Frank.
He got his blood tested in June, but did not tell Kim and her family.
“I didn’t want a sense of hope that would then dissipate,” Frank said.
The next month Frank underwent more tests.
In August, he got a call from the University of Washington Medical Center. He was the most likely candidate.
It was time to share the good news.
In September, Brenda told Kim what Frank had been planning.
The families arranged to have dinner at Mama Stortini’s in Puyallup.
“I was scared, but also really excited,” Maddie said. “What if I say something wrong and then he’s not going to like me?”
“I said, ‘How can anybody not like you?’ ” Kim said.
Meanwhile, Brenda was talking up Maddie to Frank.
“She just so deserves to live her life and be a normal kid,” Brenda said. “She’s a doll.”
Brenda’s words got Frank excited to meet Maddie.
“This is an individual that I’m going to be giving a part of my body to,” he said.
By the time the dinner ended, the families knew they would be friends for life, and a server at the restaurant couldn’t stop crying.
A SPECIAL BOND
The 10-hour operation Nov. 23 at UW Medical Center went off without a hitch.
“Even in the hospital, I could see that light coming back on,” Kim said. “She had that sense of humor. That goofy kid who makes you laugh. It had been months since I’d seen that.”
Frank said he never had second thoughts about donating his kidney.
The experience, aside from soreness that is slowly going away, has been positive.
“My faith is strengthened tremendously,” he said.
Not all donors and recipients have the relationship that Frank and Maddie have. They know it’s special.
“I told her after, ‘I officially get to worry about you for the rest of my life,’ ” Frank said. “In a sense, it’s like having another daughter.”
“There are no words,” Kim said when asked how she feels about Frank’s gift. “We’ll be friends for life.”