Joseph Smith and his will to survive

Note: The following article was written by Matt Watson, as an assignment for an interviewing class at Mississippi State University. Matt and the Smith family have given Stop SMA permission to publish the article. It was originally published by Matt’s brother on his blog.

UPDATE: Joseph Smith turned 3 in November of 2009. He was hospitalized for pneumonia for a few weeks but has made a full recovery. Bill and Melissa recently obtained a computer Joseph can use with his eyes. Bill said Joseph is a bright child and has taken to the computer very well. Bill works as an accountant and Melissa homeschools the children.

Joseph Bennett Smith is nearing his second birthday, which promises to be festive, happy, emotional and for many, nothing less than miraculous.

At the age of 20 months, Joseph has already influenced thousands of people, from Mississippi to Ohio. His example helped save the lives of at least two people. For his six siblings, he serves as a perfect playmate. For medical specialists in Mississippi, you might say he has widened an entire field of knowledge for treating a disease, his disease.

Joseph was born with spinal muscular atrophy type I, one of the severest forms of muscular dystrophy. The disease weakens all of the muscles in the body and prevents walking, talking, swallowing and many other daily physical activities.

He lays on his back on the carpet floor of the family’s house, with his head turned sideways, eyes widening and looking every direction for someone to play with. His father believes he would be a “little running-around-playing person” if he could walk.

Joseph undergoes a rigorous morning routine to maintain his health. His parents, Bill and Melissa, spend much of the morning bringing up Joseph’s respiratory secretions to avoid the all-too-familiar threat pneumonia presents to infants with SMA I.

“He got pneumonia; he nearly died,” Bill recalled. “I’ve seen on movies and heard on documentaries and things people talking about hearing the death rattle, and I mean we heard that. We heard that sound. It’s a distinct sound.”

His brothers and sisters, aged 3 to 13, have learned how to use the suction machine that brings up the secretions in Joseph’s nose and throat. Between making funny faces, waving toys in the air and playing a myriad of other games with Joseph, the children casually grab the machine to attend to him.

It was during the Christmas season when the family first realized something was different with Joseph, five weeks after his birth. The first doctor to diagnose him couldn’t honestly give the family any hope. He told them the child was going to die in about three months, the fate of many SMA I patients.

For a while, the parents did not accept the diagnosis. They talked to friends and attributed Joseph’s symptoms to a possible case of botulism. Bill recalls trying everything to “fix” the situation and increase Joseph’s strength.

For Melissa, the fight was deeply spiritual. She remembers vividly the night Joseph was diagnosed, the night she believes she encountered the devil.

“I could feel the breath from [the devil’s] nostrils on my face,” she recalled. “I heard a voice saying, ‘Where is your God now?’”

Even after the tests that confirmed Joseph’s diagnosis were completed, Bill and Melissa kept to their hardheaded mentality, strengthened by a solid conviction that only God could decide their child’s fate. Since the day she says she realized Joseph was God’s child because God created him, Melissa says she has put everything into God’s hands.

Her husband says going through Joseph’s diagnosis and being there at times when Joseph almost died were the most intense times of his life. But he has always been very pragmatic about his son’s health.

“We’ve gone through doctors at the ICU tell us to basically get ready for him to die, because he was looking like that’s where he was headed, and to decide who we wanted in the room with us,” he said. “But at the same time, as hard as that was to deal with, we still believed that if we could get over the hump of this pneumonia, we knew there were doctors that had successfully extubated these kids once they had been on ventilators.”

Those doctors were not to be found in hospitals in Jackson. Understandably, Bill said, doctors at University Medical Center had never given much thought to being able to treat SMA I effectively. After communicating with a doctor in Wisconsin, a specialist at UMC was able to get Joseph past pneumonia to thrive again.

“We’ve gotten really good medical care. We’ve gotten some really scary advice from doctors that turned out to be wrong,” Bill said. “It turned out to be a different approach that they didn’t know about. And so we’ve taught them a lot.”

After dealing with Joseph’s pneumonia, doctors have been more prepared to treat other SMA I patients, Bill says.

At only 20 months, Joseph’s personality seems to beam into the souls of nurses and passers-by in public places. Bill and Melissa say they often meet complete strangers who come up to them to say that something special is going to happen with their baby. It is unlike anything they have seen before, and they have had six other children. They believe it’s something spiritual, something inexplicable.

They haven’t decided how they are going to celebrate Joseph’s second birthday. They invited 2,500 people to his last birthday party—family, friends from their church and other supporters who keep up with Joseph on his CarePages profile on the Internet. They say they are thinking about having a smaller, more intimate celebration this time.

However they decide to celebrate it, Joseph’s birthday will be a blessing to the family and a rare steppingstone in treating a troubling disease.