Deer Park twins in need of kidney transplants get help from a stranger.
Taylor and Dylan Richter, of Deer Park, are as close as any twin brothers could be.
“They finish each other’s sentences,” said their father, Karl.
But even the tightest brotherly bond seemed powerless to the challenge they faced last year.
At 5, Taylor and Dylan, identical twins, began to experience signs of kidney problems: the blood in their urine prompting their parents to get tested to see if they had a genetic predisposition to kidney disease.
It was then that their mother, Paulette, discovered she had kidney problems so severe that a transplant would be the only option.
“My kidneys were so bad they could never get a diagnosis,” she said.
Two years later, in August of 1998, their mother successfully underwent a kidney transplant.
“Back then, you really didn’t hear about live donors, it was bascially a cadaver,” she said.
The family put that chapter behind them. But they braced themselves.
At the same time their mother’s kidney problems surfaced, Taylor and Dylan had been diagnosed with glomerulonephritis, a generic term for a form of disorder which damages the part of the kidneys that filter wastes in the body. Doctors predicted the twins would likely develop kidney problems as they matured.
“We knew there was something,” said Karl.
When the twins were 15, Taylor, after complaing of stomach pains, was diagnosed with malrotation, his stomach was twisted which caused a misplacement of his appendix and an abnormality in his speen. This condition was corrected with surgery. When doctors discovered a high level of protein in his urine, a kidney biopsy verified alport syndrome, a genetic form of kidney inflammation caused by gene mutation, which is passed through the mother and affects males more dramatically.
Taylor diagnosis meant two things: that Dylan also had it, and that, in time, both could experience serious kidney problems.
But doctors also wanted to wait because of their age, to manage the high blood pressure that escalates the disease, until a transplant was the only option, if, and only if, it reached that point.
“They told us that they could manage it with medication, with the hope that by that time, treatment would be progressed,” said their father. “They said that maybe they would be able to get them through college (before a transplant).”
Again, the family went on with their lives but again, they also prepared themselves for whatever would need to be done.
Taylor and Dylan started college at Southwesern Assembly of God University, and thrived there until the tiredness set in.
“We just slept a lot,” said Taylor, describing how he and his brother became weakened by lethargy, one of the by-products of alport syndrome.
“They came home for Christmas, Karl and I noticed they were just really tired and very pale,” said their mother. “You put it down to college. But then when they came home for spring break, we knew something was going, and we needed to have them checked.”
“We knew about the alports, we had done research and they had told us what to expect,” she said. “This was May, and this is where life starts.”
Again, the doctors wanted to hold off as long as possible, opting to manage Taylor’s and Dylan’s symptoms with medication.
“They were young, and when you have a kidney transplant, it absolutely changes your way of life, so the doctors wanted to hold it off,” Paulette Richter said.
In June, their condition had become worse, so doctors provided a year timeline before they would have to begin the organ transplant process or begin dialysis.
By July, that timeline was cut short and doctors told the family to begin the proccess of organ transplant immediately.
“I did get mad, but you just have to accept it,” Taylor said. “It’s going on, this is life and you have to think that you’re going to get a transplant and its going to get better. Life is bad, but its going to get better, that’s who you have to look at it.”
Tests, evaluations praying and waiting: with a compatible donor, the translplant happens - barring all other issues such as pre-existing health issues - but that is not a common situation, said Susan Ly, MBA, of St. Luke’s Cooley Transplant Center.
“Once they do all the tests, and donor is a compatible match, you schedule the test and surgery can just happen,” Ly said. “If there is not a match, you get put on a national waiting list.”
The average of time to wait for an organ trasplant is currently up to three years andTexas is the second to last on a list of U.S. states for organ donation.
“As big as our state is, we don’t have enough organ donors,” Ly said.
Karl Richter was a willing donor to his sons, and a match, but the family was forced to face a heartbreaking decision.
Dylan and Taylor had developed high blood pressure and lethargy and Dylan was experiencing the effects of the disease slightly more dramatically, and due to his antibodies, doctors predicted that an organ donation would harder to match, so the decision was made by doctors to place his needs before Taylor’s.
Dylan and Taylor knew what each was thinking, could complete the other’s sentences and were bound by that symbiotic relationship only twins know.
“You can’t see it, but they are connected at the hip somehow,” said their father.
But that bond was powerless to their disease.
Dylan knew he was going to receive a transplant and that he was going to get better.
“After I found out that my father was giving a kidney to me, and that Taylor had no one,” Dylan said. “How could I go through a transplant, and just leave him, or know that I could get better and watch him get worse. I should be there with him, but instead I would get better. I felt selfish that I took advantage and felt that he should get it. But I realized that the doctors controlled everything.”
Dylan’s transplant was scheduled to take place in mid-December.
As a parent, Richter was dealing with the potential recovery of one son, and the prospect of a long wait for the other.
‘Why God, why did my sons have to go through this?’ she kept asking.
Faith had always been a strong force in the family’s life, and they would soon find their Samaritan.
Linda McCourt, the friend of an aunt, had heard the twins’ story, but didn’t know the Richters personally.
She was moved and kept asking family members how she could help, called to find out how the twins were doing - so often and persuasive that the Richters and McCourt now joke she was directed to an online network where families and others share information and stories to distract her.
“They were tired of me,” McCourt said, laughing.
But for McCourt, there was only one thing to do, and it was simple, at least for her.
She researched the process, discovered that she was a match for eligibility and then listened to those who thought she was “nuts”. She didn’t know the family, had never met Taylor or Dylan, but she knew she had to do something. Even Karl Richter tried to talk her out of it.
“This was a life-changing decision,” he said. “I wanted her to be sure.”
When she didn’t get a response about her eligibility from St Luke’s, she was disappointed. That, said McCourt, is when she realized she had been on the right track.
It turns out she had been accepted, but had received a delayed response.
She describes herself as “bubbly”, but when determined and set on her course, McCourt proceeds on steel wheels.
“I knew in my heart that I had to do this,” she said.
With McCourt on board and determined, Taylor now had a match.
Taylor’s transplant had been scheduled in early December.
“He always goes through things first,” Dylan said.
Four months after the transplants, Taylor and Dylan are thriving at Southwesern Assembly of God University, where Taylor plans to go into some kind of ministry, Dylan, elementary education.
“You can’t wrap your mind around what she did,” said Taylor.
A card came to McCourt shortly after the transplant, but McCourt didn’t need gratitude, or even a simple thank you.
To the family, McCourt was more than an answer to their prayers, but an affirmation of the goodness in people.
“God puts people all around you and he knows that,” Dylan said. “It gives me hope when I see that someone like Linda. I just hope I can be that for someone.”
She might feel some occasional soreness on her left side, and she can never take Advil again, but there is always Tylenol, McCourt said, in her self-deprecating way.
The Richter and McCourt families have bonded through circumstance and also by their humor and determination to look at the positive. The twins and McCourt shared the same self-deprecating humor that minimized the uncertainties of any major life-changing event.
“We gained a family,” said Karl Richter.
“This was a negative turned into a positive experience,” added his wife.
The experience also validated McCourt’s choice to act on her heart.
“This is just something I had to do,” she said. “I could help, and I did. I believe God put everything in place for this to happen. I hope that people realize that they can save a life.”
Taylor said he can only say thank you so many times and it never seems like enough, he said. Instead, he honors McCourt by wearing pink, her favorite color.
“We went to dinner at the hospital and I wore a blue and pink shirt,” Taylor said. “How can say thank you to someone for saving your life?”
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