Mitchell Jones, 10, was diagnosed with an incurable form of muscular dystrophy when he was 3.
A Utah couple's emotionally wrenching documentation on Facebook of their dying 10-year-old son's final journey on Earth is drawing an outpouring of sympathy and support from around the world.
Chris and Natalie Jones, of the Salt Lake City suburb of Herriman, created the Facebook page "Mitchell's Journey" to chronicle their son's physical decline.
"We hope that, with the proper example, that his spirits will get stronger as his body gets weaker," they wrote.
Mitchell was diagnosed in 2005 at age 3 with Duchenne muscular dystrophy, or DMD, an incurable, muscle-wasting disease that progressively gets worse and is usually fatal by the late teens or early 20s. Last year, doctors discovered that Mitchell had cardiomyopathy, meaning his heart was rapidly deteriorating, and he was not a candidate for a heart transplant.
In a series of videos, photos and short stories, the Joneses capture Mitchell's grueling physical decline. "Follow the touching journey of a young boy whose broken heart will touch yours," the Facebook page says.
"Taking photos, our observations of him have really helped us as a family. It turned us from being victims to be more observers of this marvelous thing that was going on, even though it so difficult,” Chris Jones told the Deseret News in a story published Thursday.
The Joneses, who have three other children, started the page with the intent to keep family and friends up to date on Mitchell's prognosis.
In July 2005, upon learning that Mitchell had been diagnosed with DMD, the parents wrote:
"We had to hear it 3 times from our doctor before we began to understand what that disease is and what it does to the body. We are devastated, bewildered, sad beyond words, and scared.
"The prognosis so far is that Mitchell will be in a wheelchair within the next 4-5 years and this disease will eventually take his life by his mid teens. DMD is irreversible, progressive and it is terminal."
The page is sprinkled with emotion-laden slide shows and videos of memorable moments in Mitchell's short life. In one video, titled "Sweet Dreams," Chris Jones documents the moment his son received a puppy from his grandparents just a week before he was hospitalized for heart failure.
"This little puppy has been at his side since he returned home, offering comfort and happiness. Medicine for the heart and soul," Jones said.
"Mitchell's Journey" has since drawn followers from around the world, moved by the frail boy's plight and the family's perseverance through trying times.
"I don't know if God is real or what your beliefs are. But as a parent, I sincerely hope that whatever higher power is out there, has a hand in a successful procedure and that Mitchell may be a part of your lives for many years to come," one reader wrote.
"Like 10,000 times," another reader posted. "Mitchell's journey has given me the strength to deal with my son's recent diagnosis of Duchenne. His family has changed our lives in more ways than they could ever understand."
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The Joneses have been surprised by the outpouring of support from strangers.
"It's been really unbelievable. It wasn't our intent to do that but, it happened for some reason, and we're grateful for people's support and love and encouragement," Chris Jones told MSN News by telephone Thursday.
"It’s been amazing to feel love from everywhere. It really has lifted us up and made our burdens light," Natalie Jones told the Deseret News.
With his heart rapidly deteriorating, Mitchell's parents decided to take him home from the hospital two weeks ago so he could spend his final days surrounded by his loved ones, the newspaper reported.
"Today was a mixture of grief, peace, fear and love. Mitchell was so happy to be home. It was almost dreamlike," Chris Jones wrote in a Feb. 10 post.
"There were no hourly stats being taken by a nurse. No more chaotic mess of cables wired to his body effectively chaining him to his bed. No monitors with alarms that signal the biological horror show that is playing out under the surface of his skin. Just smiles and 100% focus on family."
A few days later, on Valentine's Day, Jones, who owns two businesses in Salt Lake City, added this entry:
"There sits on my dresser two pieces of paper, carefully folded, with hand-written instructions: one is for a mortuary, the second for a cemetery to purchase a piece of property I would give my life to not buy. I walk by these sheets of paper every morning of every day … I try to ignore them but in the back of my mind they are always there … waiting for me to open them. I dread that day."
Facebook followers have been sending prayers, good wishes, medical advice and donations to the family. One reader contacted Parent Project Muscular Dystrophy, a nonprofit organization that funds research in the fight against DMD. The group's CEO in turn reached out to heart specialists across America, and soon an appointment was set up for Monday for a surgical team in Columbus, Ohio, to implant a left ventricular assist device, a sort of mobile pump, into Mitchell’s heart, according to the Deseret News.
But Chris Jones said the family decided Thursday not to go through with the operation at this time after meeting with a post-surgical medical team in Utah.
"We're trying to work through the logistics about the feasibility of actually doing this procedure and whether he could survive it," Jones told MSN News.
"The most important thing isn’t putting a device in but how is he being supported afterward," Jones said. "We need to make sure if he's able to survive it that there is a clear runway for him to land."
The surgery, even if successful, might give Mitchell more time but isn't a cure.
Jones knows that.
"Mitchell shouldn't be alive right now; but he is," Jones posted earlier this week. "And we believe it is because of the faith and prayers of thousands of people on his behalf that perhaps the course of his life might be altered. It is marvelous to consider."
The family recently set up a PayPal account to accept donations to defray Mitchell's medical expenses.
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