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The perfect match

A rare kidney disease strikes one or two children out of 100,000. But it struck twice in Joe and Lori Dickman’s family. Against those odds, what were the chances two donors would come forward?


In this age of emails, tweets and Facebook postings, Lori Dickman chose an old-fashioned way to try to save her son’s life: She typed up a plea on a sheet of paper.

What were the odds that anyone would respond?

But what were the odds that 10-year-old Bryson would suffer from the same rare kidney disorder that had afflicted his older sister, Sarah, five years earlier?

The girl, against all odds, had found a donor — a mom with a big heart and a perfectly matched kidney to spare. The donor had seen the paper flier at her children’s elementary school.

Sarah, sickly since birth, had beaten the odds.

But Bryson? The kid was healthy, one of the tallest kids on his basketball team. He glowed with energy.

So when Lori Dickman brought her son to the family pediatrician in March 2011 for a routine strep test, she wasn’t prepared for the diagnosis: Bryson, like Sarah, had inherited a genetic kidney disorder. When she heard the diagnosis, she fell to her knees.

Dickman felt dizzy worrying about what lay ahead: endless doctor’s appointments, sleepless nights, fear that rarely left her mind.

So Dickman did what she’d done before. She posted fliers begging for a kidney for a boy with sky blue eyes who loved basketball.

What were the chances a second person would come forward to save a life?

But what is life but a series of chances?

Neither Lori nor Joe Dickman have the rare kidney disease “nephronophthisis,” but they are both carriers. That meant, according to doctors, that each of their children faced a 25 percent chance of getting the disease.

They didn’t learn this fact until 2006 when Sarah was diagnosed with the disease at 6 years old. By then, the Dickmans already had three children, including a baby boy named Logan.

The Dickmans accepted Sarah’s fate. In fact, the diagnosis put the puzzle pieces together.

Slow to talk, and tiny, Sarah didn’t take her first steps until 18 months. She was always thirsty and prone to vomiting. The little girl kept a jug of water by her bed. She was tested for diabetes and other illnesses, but everything came back negative.

The Dickmans pushed for more testing. By the time Sarah underwent blood tests analyzing kidney function in August 2006, the exams revealed Sarah’s health was already in crisis. Both kidneys were failing. There was no pill, no easy treatment that could improve her health. And there was no hope of her recovering on her own.

Obtaining a new, donated kidney was the only way she could live close to a normal, healthy life.

The Dickmans were quickly ruled out as suitable donors. Lori suffered from kidney stones; Joe was a different blood type.

At first, doctors didn’t expect Sarah to need dialysis for several years. But her condition quickly deteriorated, and within a few months of her diagnosis, she depended on night-time dialysis to survive.

It was a trying ritual. At bedtime, Lori Dickman connected sterile tubing to a opening on Sarah’s belly. The tubing was connected to the fluid bags hanging from a dialysis machine. Overnight, while Sarah slept, the machine filled Sarah’s abdomen with fluid, let it “dwell” (sit for about 45 minutes) and then drained it out. This happened over and over, all night long.

It’s during that “dwelling” when the actual cleaning of the blood takes place. Although this night-time dialysis can remove some of the waste products from the poorly functioning kidney, the procedure can only remove a small fraction of the amount that a healthy kidney can filter out.

It became a part of their everyday life, but it never felt routine or comfortable.

Lori tried to sleep nearby on the floor. But any time Lori heard a beep from the machine, she’d leap awake. Movement such as rolling in bed could force the cord to bend and prevent the fluids from entering her daughter’s body. Boxes of fluid, a month’s supply of treatment, filled a spare room of the house.

Dickman watched her daughter sleep and thought to herself:

“I have a machine keeping my daughter alive.”

The dialysis left Sarah weak and lethargic. She was placed on a special, low-sodium diet.

At school, when teachers allowed Sarah to rest in a bean bag chair, she often dozed off.

Sarah’s teachers called Dickman for guidance.

“They would ask me, ‘Should I try to wake her up or just let her sleep?’” said Dickman.

Sarah seemed stuck in a sickly limbo waiting for a kidney — but from whom?

Anxious pleas with relatives didn’t bring leads. And then, one night, an idea popped into Dickman’s head. She turned to her husband: What if we put up fliers?

What if they blanketed their community with the types of pleas you see at convenience stores?

“It couldn’t hurt,” he said.

The couple placed hundreds of fliers everywhere in their town of Acworth and beyond — schools, churches, convenience marts. They handed them to friends and family and asked them to post the fliers in their offices.

The flier featured a photograph of the child with brown eyes, a big smile, wearing a pink-and-green flowered dress.

It began with “Can you help save Sarah?”

“My name is Sarah Elaine Dickman. I’m 7 years old and attend Oak Grove Elementary School. I love to laugh and play like most little girls, but I have been diagnosed with a rare disease…This disease attacks both of my kidneys and makes them both fail. I need a new kidney very soon so I can live a full healthy life. My blood type is A+ and if there is anyone willing and able to find it in their hearts to donate one of their kidneys to me then they would also have to be A+ also…Thank you for any help that you can give to me and for hopefully helping save my life. Sincerely, Sarah Dickman & Family.”

The phone rang — again and again. Some offered financial help. Some wanted to get tested.

‘It was meant to be’

In late 2007, Laura Bolan stopped by the front office of her children’s school in Acworth. It was also where Sarah was a second-grader.

Bolan doesn’t remember why she stopped at the school; maybe it was to drop off a lunch or permission slip.

But she remembers the flier at the front desk. The smiling little girl with A positive blood, needing a kidney.

“As soon as I read the flier and saw that Sarah’s blood type was A positive and I knew what my blood type was, I can’t explain it but I knew in my heart, I was going to do it, that it was meant to be,” said Bolan, who now lives in Cartersville.

Bolan, the mother of three children, went home, discussed her plan with her husband, and then called the Dickman family. The surgery took place in February 2008.

Four years after donating a kidney, Bolan said she is happy with her decision to help save Sarah’s life. She said she hasn’t suffered any complications and returned to her daily life within a matter of weeks of the surgery.

“If anything, my health is better. I feel great and I am more diligent about taking care of my health. I exercise more, I drink more water, don’t take an Advil every time I get a little headache.”

When she heard about Bryson’s kidneys failing, she cried. She couldn’t believe the Dickmans had to go through this again. She also took action, calling everyone she knew and putting up fliers.

And even though she was moved to give one of her kidneys to Sarah, she had doubts this family could once again find a kidney donor for Bryson.

“I honestly didn’t think someone else would do it again,” she said.

A surprise diagnosis

There are no simple blood tests to determine if someone has nephronophthisis, a rare disease affecting one to two children per 100,000, and it’s typically not confirmed until a biopsy is done.

In some cases, there are early warning signs such as weakness, excessive thirst and a slowdown on the growth chart.

Dr. Leonard Hymes, a pediatric nephrologist at Children’s Healthcare of Atlanta, said the disease is usually not diagnosed until late childhood and by then, the disease has progressed. The condition involves a defective protein damaging both kidneys.

With Bryson, doctors kept a watchful eye for hints of the disease. But there was never any reason for concern. He was above average height, always on the go with boundless energy, often outdoors jumping on a trampoline or riding his bike.

And then one day in March of last year, a neighbor called about a child in the neighborhood testing positive for strep. Lori Dickman knew Bryson was riding his bike with neighborhood kids, so she decided to get her son tested for the common bacterial infection. By the time they reached the doctor’s office, Bryson was feeling nauseous, a common symptom of strep.

When the nurse checked Bryson’s blood pressure, it was an alarming 180 over 118, so high he was at risk for a heart attack or stroke.

They needed to go the ER. On the way to the hospital, Bryson vomited and started acting delirious. He mumbled about the nurse’s pretty blond hair.

At the emergency room at Children’s Healthcare of Atlanta, a medical team hooked up Bryson and pumped medicine into this body to bring down his blood pressure. They drew blood.

Before long, a doctor called Lori Dickman into a private room to break the news. Dickman sobbed on the floor. Hysterical, she asked a friend to call her husband.

Joe Dickman, Bryson’s father, never saw it coming.

“I was like, ‘No! No! we have strep! Not kidney disease,” said Joe Dickman.

Many fliers, no response

The clock started ticking again, this time for Bryson.

His parents put up fliers in all of the usual places — schools, churches and convenience marts.

Meanwhile, Bryson was getting sluggish, inching closer to dialysis. Every day after school, he’d crawl into bed. He’d doze off in class, too. The Dickmans later realized Bryson didn’t want his parents to know just how sick he really was — he’d vomit in the bathroom at school but not tell them.

Still, the boy wasn’t sick enough yet to be put on an official waiting list for a kidney. In Atlanta, about 20 pediatric patients at Children’s Healthcare of Atlanta are on a waiting list for kidney transplants at any given time. A family member is typically the donor.

In this age of social media, strangers coming forward, while still unusual, is not unheard of. Dr. Hymes thinks old-fashioned fliers are a good idea, he said, “as long as the information is accurate and doesn’t say things like my child will die in two weeks without a transplant.”

Most children receive a kidney before it’s too late, but their lives are deeply compromised while waiting. It’s hard to play sports; sometimes children don’t have enough energy to go to school. They miss out on being simply being a kid.

Children get preference over adults for kidneys, and it can take a few months or as long as a year waiting for a transplant. Once on the waiting list, most organs come from deceased people, such as young people who die in car accidents, and were organ donors. But cadaver organs tend not to function as well or be as good matches as live organs.

The Dickmans pinned their hopes on a donor for Bryson.

Months passed. No calls. Bryson moped, his normal spark gone. He no longer rode his bike.

“Why did someone call for Sarah but not me?” he asked his parents.

One night before bed during a family prayer, Bryson said, “Please God, let me feel better in the morning.”

The anguish the Dickmans felt for Bryson was compounded by another fear now lurking in the background: Logan, their youngest child. If Sarah and Bryson had inherited kidney disease — against the odds, the doctors said — 6-year-old Logan was certainly at risk. Would he, too, need a new kidney? They forced that fear down, and focused on the immediate one at hand.

There was one place Lori Dickman resisted posting Bryson’s fliers — the allergy clinic where she worked. She was afraid to ask her boss about it, not sure it was appropriate. Increasingly nervous, she finally asked — and got the OK.

So she tacked the flier on the wall right next to check in. Every patient would see it.

A flier, then a sign

For years, Tina Jennings has received shots for cat allergies every few weeks. She normally walks right in. And then one day, there were a couple people in front of her.

She looked around, and noticed the flier.

It’s a boy fishing. He’s looking at the camera with a soft smile.

“My name is Bryson Dickman and I’m a 10-year-old boy that has been diagnosed with a rare kidney disease … My 11 yr old sister has been diagnosed with the same kidney disease, she found a donor 3 yrs ago and she is doing very well with her new kidney thanks to that special lady Laura. I am Blood Type B positive … I really am a sweet boy that loves to go fishing, riding my bike & just doing outdoor things. I love my friends and family and I just want to live a happy life just like most other kids.”

“This kid deserves a kidney,” she thought to herself.

“How horrible,” she thought to herself, “if his sister got a kidney but he didn’t.”

She pulled out her American Red Cross blood donation card to see what her blood type was. B positive, just like Bryson’s.

Hearing about someone needing help always tugged at Jennings’ heart. She’d say a little prayer in hopes of that person being helped.

But this time, she felt compelled to help herself.

She texted her husband, Parnick Jennings.

“Can I give a 10-year-old boy one of my kidneys?” she texted.

“What?” he texted back.

“We can talk about it tonight,” she told him.

That night, her husband asked Jennings if she had prayed about it.

“You need to first pray about and if you feel this is what God wants you do it, then we can seriously talk about it,” he said.

And that night, Jennings prayed.

“God, if you want me to do this, give me a sign. Not a hint. I need a sign.”

The next day, she couldn’t stop thinking about Bryson. She called the clinic to get the phone number associated with the flier, and learned the child was the son of the receptionist.

She decided not to talk to Lori, not yet. She saw Cirque du Soleil at Gwinnett Arena with friends, and on the way home, she drove along an old country road with a church sign lighting up a dark sky.

“Be an organ donor. Give Jesus your heart,” the sign said.

Jennings almost veered off the road.

Once home, she ran into her bedroom and woke up her husband.

“I asked God to give me a sign. And he did!” Jennings said excitedly.

Still, Jennings wasn’t even sure she could give away a kidney. As a child, she suffered from kidney infections. She set up an appointment with her primary doctor. He did an ultrasound of her kidney and gave her the initial OK. She would need further evaluation, but she could proceed.

She also returned to the church with a sign and snapped a picture of it.

“I just thought no one is going to believe this story,” said Jennings.

‘It only takes one’

When Jennings returned to the allergy clinic for her shots, she approached Lori Dickman.

She didn’t want to get Dickman’s hopes up, so she kept the conversation short.

“I’ve seen my doctor about this and had some blood work done, and I want to see what the next step is about seeing if I can donate my kidney to your son, Bryson,” said Jennings.

Stunned, so accustomed to talking to Jennings about allergy shots, Dickman could barely talk. Dickman blinked twice and placed her hands over her mouth.

She managed to give Jennings a phone number at Children’s Healthcare of Atlanta.

“With Sarah so many people came forward and with Bryson, nobody has come forward. You are the first person,” said Lori Dickman.

Jennings smiled.

“Well, it only takes one.”

Donor’s history of giving

After weeks of testing, all indications suggested Jennings was a match and healthy enough to be a donor. Jennings told Lori she had prayed and knew giving a piece of herself to Bryson was God’s plan.

Jennings, who manages 65 condos for a living, had a home day care many years ago and always had a soft spot for children. The nurturing, compassionate side of her rubbed off on her two children.

Daughter Megan Tinkle, 26, became a nursing student (and also accompanied her mother to all her doctor visits associated with the transplant). Son Zachary Tinkle, 24, is studying to be a youth pastor or missionary.

Jennings is an avid volunteer and involved in multiple events to help people.

Earlier this year, she co-chaired an annual “Duck Derby” (which involves “adopting” plastic ducks that race down the Etowah River) for Advocates for Children, a children’s charity, raising about $80,000. She and her husband also organize a Christmas luncheon every year. Last year, the “Community Christmas Luncheon” served 2,300 people. Throughout the year, Tina and Parnick Jennings collect coats. So last December, the couple not only organized an event serving a home-cooked meal to hundreds of people, they also handed out 700 coats.

Giving a piece of her body to a child in need didn’t surprise those close to her. It was just the way she lived her life.

But she still wasn’t sure her doctors would allow her to do it. Doctors wanted Jennings to see heart and liver specialists.

Jennings was discouraged. She suddenly wondered if God’s plan didn’t involve her giving a kidney to Bryson.

“I thought maybe God wanted me to bring the Dickmans closer to God,” she said.

And in fact, the Dickman family decided to start going to church.

In January, they walked inside Woodstock Baptist Church. Lori Dickman carried her worn, leather-bound Bible from her childhood. She wrote on a church card they wanted to talk to the minister. They were interested in being saved. They wanted to raise their children in the church.

They told the minister about hearing from Jennings when all hope seemed lost.

“When she contacted us, she was positive and has a strong faith, and we wanted to follow in her footsteps,” Lori Dickman said.

Lori and Joe Dickman noticed changes. They were more patient. Joe Dickman, quick to honk the horn in traffic, was Zen-like on the road.

They still faced stresses. Joe lost his job as a superintendent of a grading company in December 2011, and while Medicaid covered most of the medical bills, they still worried about cobbling together enough money for food and gas to go back and forth to the hospital. Lori Dickman got a part-time job working a few hours at night at a nearby gas station after leaving her job at the clinic to care for Bryson.

Still, they didn’t see themselves as unlucky.

“The fact that two complete strangers came forward gave us so much faith in humanity,” said Joe Dickman. “I look around and just see so much humanity and so much good in people.”

When their spirits fell, they turned to prayer.

“When I get upset and I feel like I am losing it,” Lori Dickman said, “Joe says, ‘Look at me. Bryson is here. And Sarah is here. Think of what we have now and the blessings we have as a family.’”

They prayed for better, healthier days ahead for their family. And they prayed for Logan to be spared. They resolved to get Logan’s blood analzyed to determine if there was any sign of kidney failure.

A ‘boy’ kidney for Bryson

In March, an appointment with Dr. Hymes showed Bryson’s numbers had dropped and his kidneys were only functioning at 15 percent. There was a silver lining in the news: He reached the threshold for being officially placed on a waiting list for a kidney.

But would Jennings get the final OK?

Lori Dickman called Jennings from the hospital to share the update.

Jennings was across the street at Emory University and she had some news to share as well: She had just gotten final approval to donate one of her kidneys.

The surgery was scheduled to take place in a couple of weeks.

But first, Jennings and Bryson needed to meet face-to-face for the first time.

They gathered at Food for the Soul restaurant in Cartersville. Bryson was shy and didn’t say much. Jennings knew the boy was not feeling well.

He barely touched his plate of chicken and gravy with mashed potatoes.

Meanwhile, Sarah excitedly chatted and couldn’t even stay in her chair. She told Jennings about being scared at first about being on dialysis, but then she got used to it. She told her she actually liked being in the hospital because the nurses were so nice to her. She told her about receiving a kidney from a woman she had never met before, and how the story got a lot of attention. Newspapers across the country ran stories about it. Talk show host and comedian Ellen DeGeneres heard about it and even sent her flowers.

“Maybe you will go on the Ellen DeGeneres show and you know, she gives a lot of her guests prizes, maybe you’ll get a prize,” Sarah gushed.

And then Sarah stood up, pulled up her shirt and proudly showed her scar across her abdomen.

Bryson remained quiet, forlorn. Jennings learned one reason why: The child was a little disappointed his kidney was coming from a woman. After all, his sister got a kidney from a woman. He assumed his would come from a man.

Jennings got an idea.

She leaned over to Bryson and just above a whisper said, “I was born with a girl kidney and a boy kidney. Would it be OK if I keep the girl kidney and give you the boy kidney?”

Bryson flashed a smile.

“That would be good,” he said.

Good news, finally

Weeks after the surgery, Bryson nervously sat on his parents’ lap. He doesn’t like being the center of attention and yet, on a May afternoon at his school gymnasium, all eyes were on him.

Sporting a new haircut, he looked like his old self.

The school held a fund-raiser — complete with a pie throwing contest — for Bryson and his family.

When Jennings arrived, she and Bryson embraced.

“Are you feeling better?” she asked.

He nodded.

“I am glad,” she said, flashing a big smile.

As kids lined up to get pies flung in their faces, Jennings leaned over to Bryson.

“I think I’d rather give a kidney than a get a piece of pie in the face in front of 1,000 kids,” said Jennings.

Hundreds of students filling the gym stood up and gave Bryson and Jennings a standing ovation.

Bryson was happy to be back in school with his friends — right where he belonged.

And Jennings felt like she was also where she belonged.

“From the time I saw the flier and I saw that I was B positive, I was dead serious,” she said. “I just knew I was going to do it. It was the only time in my life I knew exactly what I was doing was God’s will, and for six months, I was doing exactly what he wanted me to do. That was so much fun and that was the awesome part.”

Thanks to both Bolan and Jennings, the prognosis is good for Sarah and Bryson. Donated kidneys don’t last a lifetime, but they are lasting longer, with expectations between 10 and 20 years.

At home, Bryson and Sarah keep tabs on each other, checking with their mother to make sure the other has taken their medicine. Sarah loves to give Bryson big hugs; he’s not as cuddly. He enjoys playing outside on scooters or bikes.

In July, the Dickmans received some good news about their son Logan, too. The test on his kidney function was normal. He will still need to be tested every year, and the disease often emerges in later childhood, but for now, he’s OK.

Every night before bed, the Dickman family get on their knees and pray. And every night, they thank Laura and Tina for “giving a kidney so Sarah and Bryson can live a good, happy life.”

With palms pressed together and their eyes closed, Bryson and Sarah say one word, slowly and together:

“Amen.”

About the reporter and photographers

Helena Oliviero  joined the AJC in 2002 as a features writer after four-year stints with the Sun News in Myrtle Beach, S.C., and Knight Ridder as a correspondent in Mexico. She lives in Decatur with her family, was educated at the University of San Francisco and is often inspired by the people she writes about.

Bob Andres has worked for the AJC for 14 years. A native San Franciscan, he also has worked as a photographer and editor for newspapers in California and Florida.

Bita Honarvar has worked for the AJC for 13 years. She was born in Detroit but spent most of her childhood in Atlanta, save three years in Shiraz, Iran. “I feel honored to have people allow me into their lives, sometimes at very emotional moments, to document and tell their stories,” Honarvar says.

How we got the story

Helena Oliviero first heard about Sarah and Bryson Dickman receiving kidneys from strangers in an email to the newspaper from their father. Oliviero interviewed the Dickman family several times, spending time with the family in their Acworth home, accompanying them to a doctor’s appointment and a school fundraiser. Oliviero also interviewed Bryson’s doctors at Children’s Healthcare of Atlanta. The Dickmans, along with Tina Jennings, helped Oliviero recreate some scenes and dialogue.

For information about donating a kidney, contact the following kidney transplant centers in metro Atlanta:

Emory Healthcare

For general information about donating a kidney, go to www.emoryhealthcare.org/transplant-kidney/living-donor/index.html

An Emory transplant coordinator can be reached at 404-727-3250.

Piedmont Hospital

For general information, go to www.piedmont.org/PH/PiedmontTransplantInstitute.aspx

A Piedmont living donor transplant coordinator can be reached at Piedmont at 404-605-4605 or 404-605-4128.

To donate a kidney

Emory Healthcare: For general information about donating a kidney, go to www.emoryhealthcare.org/transplant-kidney/living-donor/index.html. An Emory transplant coordinator can be reached at 404-727-3250.

Piedmont Hospital: Go to www.piedmont.org/PH/PiedmontTransplantInstitute.aspx. A Piedmont living donor transplant coordinator can be reached at Piedmont at 404-605-4605 or 404-605-4128.

See more photos and video: http://www.myajc.com/s/living/personal-journeys/


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