When Reese McDonald of Brandon grows up, he probably won’t be able to remember a time when he wasn’t using a wheelchair. At only 17 months, he can’t even speak yet but has no problems wheeling around in a pushchair barely a yard tall.

Reese has Spinal Muscular Atrophy type II, which causes muscle weakness that progresses with age.

Before he was diagnosed with the disease, his parents, Matt and Cortney, were already familiar with it. Reese’s older cousin, Evie, also has SMA II and will turn 4 soon.

When Jeff and Dee Horton, Evie’s parents, received their daughter’s diagnosis, they were clueless about the disease.

“When Dee and Jeff found out, we had never heard of it, and we didn’t know what it was,” Matt said. “We had no idea. We just really were taken back.”

Since Evie was always shy and didn’t allow many people besides her parents to hold her, Matt said he was not immediately aware of how much SMA was affecting her.

“I picked her up one day at church, and I actually bent over to do something for one of my children. And I didn’t have support on her back, and she just fell over, almost out of my arms,” Matt said. “That day it just kind of really hit home with me how weak that she is and exactly what this disease was doing to her.”

Soon after Evie’s diagnosis, Matt’s brother-in-law Jeff started his own organization, Stop SMA, to help raise awareness and funds toward treatments and a cure for his daughter’s disease. He asked Matt to be on the board of directors, not knowing Reese would soon be diagnosed with SMA also.

“I knew how much he cared about Evie, and I knew he would do anything to help the cause,” Jeff said. “I was looking for people who would be passionate about the cause, and Matt’s just got a good personality.”

But Matt’s stake in the cause significantly doubled about six months later.

Before the first Stop SMA board meeting, doctors informed Matt and Cortney that their own child had SMA as well.

Before Reese, Matt and Cortney had three healthy children — Avery, Zach and Millie Grace. In the eyes of everyone around them, they were the picture perfect family. Having a child with the same condition as Evie was not on their radar.

“Your initial thought, you think, OK, there goes my perfect family,” Matt said. “But in all actuality, it still is a perfect family, because that’s the way God intended it to be. Reese is just an absolute joy to be around.”

Contrary to what some people think, Matt said having a child with SMA II has not been a burden on the family. The McDonald family does everything a typical family would do. Although Reese may not ever be able to play sports, he enjoys going to physical therapy where he practices sitting up and rolling over by himself and is so far healthy.

And like all little toddlers, Reese is perfectly able to get into trouble and his parents still have to watch him. Not long ago, he got his first wheelchair, which opened up his whole world. Now he can interact more with other children, get into kitchen cabinets and roll out the toilet paper.

Reese’s mom, a surgeon tech, stays at home with the children and takes calls at night and on the weekends. Her faith in God and a support system of family and friends is especially important to her. As a stay-at-home mom, she said a large part of taking care of Reese on a daily basis is new to her.

Since Jeff and Dee had a child with SMA first, their experience enabled them to make things easier for Matt and Cortney when Reese was diagnosed.

“If it had come first with us, I would be sitting there with my thumb in my mouth not knowing what to do,” Cortney said.

Matt said, unlike Jeff, he would have never thought about starting his own organization to fight SMA had Reese been born first.

“It was still a shock, but at the same time, it was so much easier because we knew what we were dealing with,” Matt said.

He said Jeff has taken on the challenge full-force, and Matt feels fortunate to be a part of it.

In fact, if any treatments or a cure is discovered soon, Reese and Evie would greatly benefit, since they are young enough to significantly rehabilitate.

When StopSMA launched, one of its first objectives was to help fund research for the development of a groundbreaking drug called Quinazoline, the first pharmaceutical compound produced specifically for SMA. The drug increases the production of a protein that people with SMA lack.

Matt said a drug company has picked up the project, allowing Stop SMA to focus on other types of treatments as well.

However, Quinazoline may be the most promising, at least in the short term. The drug is now ready for human trials, which Jeff said doesn’t happen every day. “Where we are right now is freaking monumental,” he said.

Matt and Cortney hope treatments will be found soon so that perhaps their son will one day be able to take his first step. Research has been able to promise more in recent years, and the next five to ten years may be even more groundbreaking if enough people support what Jeff calls simply “the cause.”

Although Reese enjoys using his small wheelchair and going to physical therapy once a week, with enough support to fund SMA research, both could eventually be a matter of the past.

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.