Devin and Nick Coats' mother is on a mission to spread awareness about the state of the donor registry in the U.S.
Devin and Nick Coats were best friends.
Sharing a special bond unlike any other sibling connection, the identical twins from Louisiana did everything together and were there for each other through good times and bad.
But at just 18 years old, Devin will have to learn to live without his brother, as the teen received a liver transplant to offset a deadly disease that took the life of his twin.
After complaining of a searing leg pain that only worsened with time, Nick was taken to the emergency room where doctors realized his condition was serious.
Since Devin was his identical twin, both boys were evaluated by specialists.
“They were diagnosed with cirrhosis of the liver on the same day in March 2017,” their mother, Margi Coats, told InsideEdition.com.
Cirrhosis causes oftentimes irreparable damage to the liver, and for the boys, transplant surgery was the only option, but they were forced to wait until the disease reached a certain level of severity before they could be placed on the donor registry.
“Nick’s MELD [model for end-stage liver disease] score was a 13 and their doctors said they needed the numbers to be in the high teens in order to considered [for the donor registry],” Coats said.
So the family began what they believed was a mind-boggling process of waiting for Devin and Nick’s conditions to deteriorate with the hope that a transplant was in the not-so-far distance.
"They were sick, they needed livers, but you need to wait for them to be sicker and sicker and sicker? It didn’t make sense to me," Coats said.
As Nick’s condition deteriorated, he was diagnosed with angiosarcoma, cancer of the inner lining of the blood vessels.
“With a diseased liver, cells mutate and change, and it’s very likely people can develop cancer on top of a diseased organ,” Coats said.
The devastating development took him out of the running for a transplant, which Coats said is a byproduct of an inherently flawed system reliant on too few donors.
“When people are diagnosed with liver disease, they should immediately get listed,” Coats said. “Had they gotten listed right away, Nick wouldn’t have had the opportunity to develop cancer on top of it.”
The family braced themselves for a lengthy cancer battle, and Nick led the charge.
"He stayed strong in the hopes we could eradicate most of the cancer," his mother said.
But on Monday, he lost his year-long fight.
“As Nick now has a new life in heaven, he left behind his twin. Devin feels deep loss and I ask for all of you to please say lots of prayers for him,” Coats wrote in a Facebook post following Nick's death.
Devin, who received a transplant in January and has made a full physical recovery, must now go through the loss of his other half.
"Devin hasn’t had a lot of time to express his feelings," his mother told InsideEdition.com. "We just were in the car for 45 minutes, and it was just a lot of silence. I asked him, 'Devin how are you feeling?' He said, 'I feel strong. I'm not sure if I’m supposed to feel that way.' I said, 'Nick was always strong. Nick would want you to be strong, baby.' He said, 'I know.'"
As Coats mourns her son and prepares for his memorial, she’s found strength in spreading awareness about the state of the donor registry in the U.S.
"We've got millions of people across this country — there should not be a waiting period," she said. "There should not even be a MELD score. There are people dying every day."
Her hope is that the fear associated with becoming an organ donor fades as information about the process becomes more available.
"There’s not enough people signing up," she said. "I think people think it’s more gruesome than it is. It’s not misconfiguring or deforming anything of the body. And I’m sure some people think, ‘If I’m in the ICU, they’ll just let me die.' That is so false."
Coats has also found comfort in knowing she needs to do her son's memory justice.
“Nick had a genuine soul,” she said. “He really did; he had a big heart. Nick was very wise for his young age... he was very strong. And facing what he had to face, if he hadn’t been, I think he just would’ve lived his days depressed. But he still continued on, to have hope and have love."
Nick loved music and was a huge Eminem fan.
His songs will be played at a memorial outside, Nick’s favorite place to be.
"We found a big oak with moss dripping," his mother said. "That was his wish, to be outside with nature. We’ll have pictures. He wanted to be remembered for who he was."
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