Devin received a new liver earlier this year.
But while waiting to be put on the organ transplant list, Nick developed an aggressive form of cancer.
“I asked him, I said, ‘Is there anything specifically you want me to do while I’m coming up and going through life itself?’ And he said just be me, just do what I want to do. And I said, ‘I got that,’ ” Devin recently told ABC News.
Nick died earlier this week, his mother said.
“My beautiful son Nick departed this world last night a little after 8:30pm,” the twins’ mother, Margi Coats, wrote Tuesday on a Facebook page chronicling their fight. “My life line has been severed as Nick went on to be with the Lord.”
She added that Devin now “feels a deep loss.”
“He will wake this morning and feel empty,” she wrote. “He will look for Nick and the realization will hit him hard. Although Devin remains strong knowing Nick is in a better place and at peace, he will feel lonely. Please pray for God’s blanket of comfort and peace to wrap around Devin’s shoulders. Today and everyday will be hard for him.”
Coats was not immediately available Wednesday for an interview with The Washington Post.
It all started earlier last year when Nick called his mother from school. He told her that his hamstrings burned so badly he could hardly sit down at his desk. With the boys quickly approaching 6 feet tall, his mother assumed it was simply growing pains, she recounted on a GoFundMe page for the twins.
When the teenager continued to complain, his mother took him to the emergency room, she said.
A blood test revealed Nick’s platelets were significantly low and, since he was an identical twin, doctors recommended checking out Devin, too. In March, both boys were diagnosed with cirrhosis, their mother said.
Cirrhosis occurs when damage has been done to the liver and, in attempting to heal itself, it forms scar tissue. But as scar tissue builds up, it makes it difficult for the organ to function, according to the Mayo Clinic.
When caught early, cirrhosis can sometimes be stopped. But in the Coatses' case, they needed new livers.
Doctors planned to put both boys on the transplant list — but first, their conditions had to worsen so they could qualify.
It was while waiting that Nick developed lesions on his liver.
In August, his mother said, he was diagnosed with angiosarcoma, a rare form of cancer that attacks the lining of the blood vessels.
“I felt like my whole world had changed in that moment,” she wrote on the GoFundMe page. “So many questions were rushing through my mind and I didn’t know the severity of what he had but all I knew is that my son, a healthy young twin boy, is now battling cancer on top of cirrhosis of the liver.
“What do I do now? How do I accept this? Why God, why? All of these questions and so many others flew through my mind. From feeling angry. To bitterness. Why him? I cried and cried and it was all I could do to not collapse to my knees completely overtaken with emotion. But I knew I had to hold strong for my son, even as hard as that was.”
She wrote that she tried to show her son it wasn’t the end, “but deep in my heart, I knew it was bad.”
Now, the grieving mother is speaking out about donation — and the lack of available organs for those in need.
Less than a day before Nick died, Coats wrote about the shortage problem in a Facebook post, saying, “we have WAY too many people in this country for there to even BE a waiting list.”
“If my son didn’t have to wait due to the lack of liver donors nationwide, he would’ve been transplanted before time allowed the liver cancer to develop as well,” she wrote about Nick.
“Don’t let this be your son, daughter, mother, father, sister, brother, cousin or even friend because you know something? As I type this, I’m laying in my son’s bed watching him slowly slip away with his hand in mine, with my heart pounding out my chest, because I promised I would never leave his side. No one should have to watch their loved [ones] pass because of lack of organs. There are way too many people in this country for this to happen!”
As The Post’s last year, there are not enough livers for those who need them. In 2016, 7,841 livers from deceased donors were given to patients across the country, though 14,000 other patients were kept waiting for one. reported
Since 2002, people have been placed on waiting lists at the nation’s 143 liver transplant centers based on a score derived from blood tests that indicate the progress of their disease. The higher the score, the sicker the patient.Using the scores, an organ is first offered within the local district and region where it was donated, before it can be distributed to other regions if there is no match between donor and recipient. People with means can register at multiple transplant centers, which is how the late Apple founder Steve Jobs, who lived in California, received a liver in Tennessee.
The Organ Procurement and Transplantation Network, which oversees organ allocation in the United States, approved a policy last year to help correct a geographic disparity in organ distribution.
Coats told ABC News that an organ donor gave one of her twin sons “a new lease on life.”
But the lack of available organs, the mother said, may have led to her other son’s death.
In a Facebook post announcing Nick’s death, Coats wrote that she hopes his organs can be donated, “so I know he’s still alive through the life of someone else!”
For more information on organ donation or to register as a donor, visit organdonor.gov, an HHS website.