With time running out, Remy Marceau turned to social media to find an answer to his prayers — a kidney donor to save his life.
The Facebook launch — which went viral in June and led to 12,000 people sharing his story in 10 days — derived from a 10-year-old email prayer chain.
“To think this all started from one little group, from one little church in Glendale,” said Yvonne Marchese, a member of the chain who also helped launch the website. She currently works in the national office of Catholics Come Home in Georgia.
The blue-eyed former youth group member from St. James Parish in Glendale has been part of a continuous prayer chain for his failing health.
As a young boy, Marceau suffered from debilitating muscle cramps due to low potassium. As he aged, his symptoms gradually became worse. He was eventually diagnosed with Bartter Syndrome, a condition caused by kidneys that can’t retain sodium.
Because his kidney’s over-filter, he doesn’t need dialysis and he is not a candidate for a deceased donor. Instead, he needs a living donor. He receives daily potassium hydration infusions at home, which is the equivalent to drinking 80 Powerade sports drinks.
Even with that, he’s still dehydrated. The infusions recently went from six to eight hours a day. It isn't working.
For the past two years Marceau has been seeing doctors at Scottsdale’s Mayo Clinic, whose medical board recommended the 25-year-old for a transplant. So rare is his surgery, it will be a first for the transplant team. The high priority case involves removing both kidneys in two separate surgeries.
“Remy is very positive and always smiling. It’s who he is, but it’s not how he feels,” said Beverly Fraser, prayer chain founder and theology teacher at Notre Dame Preparatory in Scottsdale. “He’s going to die without a transplant. It’s life or death.”
His private, personal request for prayers from his former parish youth group turned into a social media campaign resulting in many offers to help. A match has yet to be found.
“Things aren't getting better,” Marceau said, “They're getting worse.” Those interested in seeing if they're a match to donate a kidney can call the Mayo Clinic at (480) 342-1010 at give his name, Remy Marceau.
“Without question the website had a huge impact,” prayer chain member Marchese said. “Social media has the ability to get out news to millions of people. This is the best of social media — using it for the good.”
Although both Fraser and Marchese had a hand in launching the Facebook page and a website, they believe God directed their actions.
“I have been praying for him for 10 years,” Marchese said. “I was just at the right place at the right time for God to use my talent to get the ball rolling.”
For Remy, the decision to go public was a difficult one. He admits he was afraid because reaching out made him feel vulnerable.
He keeps up his appearance and happy attitude in spite of the constant pain he is in.
“I don’t look sick because I don’t want to look sick,” Marceau said. “I was meant to do this for a reason. I am turning it into a positive experience because it’s the only way to get through it; friends, prayer and attitude.”
According to the National Kidney Foundation of Arizona, more than 2,200 people in the state are waiting for an organ transplant.
Of those, an overwhelming 1,588 are in need of a kidney transplant.
Blessings have outnumbered the disappointments throughout the process. The viable donors who called the clinic but were not a match for Marceau were asked if they would consider donating a kidney to someone else on the transplant list.
Yet, the most profound grace has been the ability for Marceau to set aside his own suffering and reflect on how his experience could benefit others.
“What I’m learning as I go through this is how can I make this process successful for someone else. People shouldn’t have to wait so long that it’s too late,” he said. “That’s what runs through my head every night.”
Marceau has set his sights on becoming an advocate for other patients at the clinic following his imminent surgery.
“I don’t have any fear of what’s coming. I know I’m taken care of by God,” he said. “He’s in full control of everything.”
Visit Marceau’s Facebook page at www.facebook.com/kidneyremydy and his website at www.remydy.com. For more on becoming a kidney donor, contact the foundation at www.azkidney.org. J.D. Long-Garcia contributed to this story.