The problems of a 10-year-old sound something like this.
“Can I pleeeaaase have an email account?” pleads Lindsey Duquette, jumping up and down in front of her mom, Pam Duquette, in the family kitchen in Sparks. “All my friends have email.”
It’s enough to make any parents roll their eyes. But for the Duquette family — dad is former Orioles vice president-turned-baseball-analyst Jim Duquette — childhood dramas like this secretly make them smile.
A year ago, the now-rambunctious Lindsey was bedridden and lethargic. She couldn’t attend school or play outside with her friends. She was too weak to even feed herself.
A rare kidney disorder with no known cure, focal segmental glomerulosclerosis, had destroyed her kidneys and seemed to have taken her soul. Last year she entered end-stage renal failure, and her parents made the painful decision to have both of Lindsey’s kidneys removed.
The drastic surgery had an unexpected and positive side effect. Lindsey’s bubbly personality returned.
Without scarred kidneys leaking protein into her urine and weakening her body, she was once again an energetic kid. The downside was, she needed daily dialysis treatments to do the job her kidneys once performed.
But soon Lindsey will have a new kidney and, hopefully, an end to dialysis and the start of a normal life.
On Monday, she and her dad are slated to be wheeled into an operating room at Johns Hopkins Hospital, where Jim Duquette will give his youngest daughter one of his kidneys.
The three- to four-hour transplant procedure won’t cure Lindsey. There is a 50 percent chance the disease will attack the new kidney. But it also could put her in a form of remission, an outcome the family hopes for.
Like a typical baseball man Jim Duquette often looks at life from a perspective of statistics: What’s the percentage? What are the odds? He always hoped Lindsey would be one of the 90 percent of children who outgrew her illness. Instead, she is one of the 10 percent who didn’t. But he said there is new hope, that with the kidney transplant, this time the odds of success favor Lindsey.
“This has been a tough road so we’re realistic,” Duquette said. “But we’re hoping this will finally be the time life gets better for our little girl.”
Lindsey seemed like a healthy toddler until one summer day in 2004.
Aug. 27 was Jim and Pam Duquette’s 10-year wedding anniversary. They celebrated in a suite at a New York Mets baseball game at Shea Stadium, where Jim was general manager. Their other two children, Lauren and Matthew, also joined them.
Before the game, 2-year-old Lindsey’s ankles and feet began to swell and she seemed sluggish, worrying Pam Duquette. A Mets executive also in the suite offered to call his wife, who was a pediatrician.
When the pediatrician heard the symptoms, she worried it could be minimal change disease, which damages vessels inside the area of the kidneys where blood is filtered and waste is removed. Scarring of these filters — called glomeruli — allow protein to leak from the blood into the urine. It is the most common cause in children of a condition called nephrotic syndrome, a group of symptoms that include protein in the urine, low protein levels in the blood and swelling. Minimal change disease can advance to FSGS.
Some children can manage with steroids and other medications. For others like Lindsey, the steroids become too much and their condition progressively gets worse.
Lindsey was rushed from Shea stadium to Flushing Hospital and transferred later that night to Montefiore Medical Center in the Bronx where the pediatrician’s guess was confirmed.
Lindsey’s heart rate was high and protein levels in the blood low. She would stay in the hospital until Thanksgiving Day as her frail body worked to fight off side effects of her newly discovered kidney condition. She was put on a respirator when she had problems breathing and placed in intensive care because of peritonitis — a deadly condition that causes inflammation of the membrane lining the abdomen.
“It didn’t seem real what was happening,” Pam Duquette said. “She was so sick.”
The next few years of Lindsey’s life were spent in and out of hospitals and trying different cocktails of drugs in hopes of stabilizing her condition. Some of the steroids made Lindsey swell up like a balloon. One experimental drug she tried listed fatality as a possible side effect. Another made her cheeks burn. The ice packs she used to cool them gave her frost bite. Her bones became brittle and her growth slowed.
“The steroids were eating away at her body,” Jim Duquette said.
As his daughter suffered, Jim Duquette was released from his job with the Mets and replaced by Omar Minaya. If it was another time in his life, he might have been more devastated. Instead, his daughter’s illness kept things in perspective.
“I almost remember it in some ways as a relief,” Jim Duquette said. “At times I didn’t know how the heck I was going to do both jobs, helping and assisting with Lindsey’s health and doing the job with the Mets.”
The Orioles hired Jim Duquette as a vice president in 2006 and the family moved to Maryland, where Lindsey could be treated at Johns Hopkins Children Center. He has since left the Orioles to take a job as a baseball analyst for MLB Network Radio.
In 2008, Lindsey was officially diagnosed with FSGS.
Only about 5,400 people get the disease each year and its cause is unknown. One theory is that it has something to do with a person’s immune system and not the kidneys. Former NBA player Alonzo Mourning is one of the people who suffers from FSGS and has brought attention to the disease.
“More research is necessary to figure out the pathways, where the disease is coming from and what causes it,” said Henry Brehm, executive director of the NephCure Foundation, which supports research to find a cure. “Until the scientists figure out what causes it, we can’t develop a therapy or drug.”
Duquette said he never thought twice about giving up a kidney for his youngest daughter. Still, he felt knots in his stomach when he got the call that he was a donor match while taking the train to New York where he tapes his radio show.
“We actually had a match and it was me,” he said.
Jim Duquette hopes to be healed enough from the surgery to lead a walk and fundraiser scheduled three weeks later for the NephCure Foundation. He sits on its board and hopes to one day find a cure for the disease to help his daughter and other children.
The Duquettes always have been honest with Lindsey about her disease and the same is true about the kidney transplant. Lindsey talks frankly about her condition.
“Sometimes, it seems unfair that I have this,” she said.
She admits to being a little scared about the transplant. Her parents planned it for the summer so she wouldn’t have to miss school.
Lindsey looks forward to stopping dialysis, calling it annoying. She felt the urge to throw up the first time she had the mixture of dextrose, sodium, potassium and other electrodes pumped into her body to remove the toxins from her blood.
She can’t wait for sleepovers with friends, which she can’t do because her dialysis takes place overnight. She looks forward to eating some of her favorite foods again, like spaghetti sauce and orange juice, which have high levels of potassium. The kidneys maintain stable potassium levels in most people.
Lindsey’s nephrologist at Hopkins, Meredith Atkinson, said it is unclear when they will know if FSGS will attack the new kidneys.
“It could happen right away, and sometimes it does,” she said. “Or it could happen later on.”
Before surgery Lindsey is undergoing blood filtering to remove harmful antibodies and cut back on the risk of FSGS reappearing, Atkinson said.
Even with the looming surgery, Lindsey is a typical kid. One day after school she played Sponge Bob computer games and frolicked with the family dog. She plays on the basketball team even though she is noticeably smaller than her other teammates.
Every now and then she even fights with her brother and sister, who sometimes tease her for milking her kidney condition to get what she wants.
And sometimes she nags her mom for things like email accounts.
“But everyone has one.”