House of Love: One man's mission to care for wife, sons in face of life-threatening conditions

Alex James doesn’t like being called a “saint,” but to many who know his family and his story, he’s just that. For over 24 years, Alex has been caring for his wife, Liz, and twin sons, Matt and Will. In 1991, Liz was diagnosed with multiple sclerosis (MS). In 1993, the couple’s then-2-year-old boys were diagnosed with muscular dystrophy (MD).

Now, they’re the focus of a new documentary, “House of Love,” which chronicles the family’s daily lives with the medical conditions. For the past two years, filmmakers have shadowed the Greensboro, N.C., family, going out with the boys on their regular outings and following even the life-threatening moments. They’re fundraising to finish their film, with all excess proceeds going to MS and MD foundations.

For Liz, 56, MS, in which the body’s immune system attacks the central nervous system, has left her totally disabled and unable to speak for the past eight years. Matt, who is autistic, and Will, both of whom are 24 and on ventilator support, require constant care not only to perform daily functions but to avoid deadly lung infections. Muscular dystrophy is a condition marked by progressive weakness and loss of muscle mass. Matt’s health has been unstable for most of 2015, as he’s struggled with infections and hospitalizations.

Thanks to Alex’s unyielding care and a large network of supporters, the boys have enjoyed adventures big and small.

“He hates to be called a saint. It's such an overused word, so generic, but honestly, that's who he is. In his case, it truly describes him,” Liz’s childhood friend, Sally Cohen, 56, told foxnews.1eye.us.

“They’re the happiest family I know,” Cohen added. “They’re able to enjoy life because they let go of a lot of the clutter the rest of us allow in our lives.”

“It’s amazing how many people are involved with our family’s daily life and doing all kinds of things to help,” Alex, 57, told foxnews.1eye.us. “It’s easy to keep a positive attitude with that.”

“They look at each other with such passion.”
Liz and Alex met in 1981 and hit it off right away. It took him three years to propose, he said, but there was no doubt it his mind that they were meant to be.

“I don’t know what I was waiting for,” he said.

Alex and Liz’s relationship is one of deep love, unlike any other, Cohen noted.

“Even to this day, she can’t talk, but they look at each other with such passion and love, and they always kiss each other goodbye and she kisses back,” she said.

They married in 1985 then had the boys in 1990. After experiencing odd symptoms— visual complications, a slight limp, mild fatigue— Liz was diagnosed with MS in 1991. Matt and Will began missing physical milestones in 1993, and were diagnosed with MD.

Liz’s symptoms were on and off until 1995  and she could still see well enough to read. However, by 1996, she was disabled enough to require a walker and had to leave her job at Innisbrook Wraps, a fundraising company.

“She went to a [specialist], tried all the approved injectable drugs that many people see relief from, and he said, ‘You’re my worst patient,’” Alex said.

Liz’s health took a big tumble at the end of 2006, and by 2007 she lost her ability to eat, her speech abilities decreased, and she can no longer be left home alone.

“We can read her lips fairly well,” Alex said. “She’s got a great network of friends patient enough to sit with her and read lips.”

After a long career at IBM, Alex, a Harvard graduate, left the company in 2003, when Liz was still able to use a scooter at home, and was able to dress and feed herself. At that time, he started to home-school Matt and Will. The boys had reached middle school, but the family realized traditional school was not the best fit.

“They’re not just physically disabled but have developmental delays, so they were in special ed … it just didn’t look like the [middle school] options were appropriate for someone who’s not going to be heading out to try to find some kind of employment after school, who’s going to get worse,” their father said.

After they turned 16, Alex transitioned their schoolwork from structured to one based on life experiences, taking them out to meet new people and visit their favorite places, including the Greensboro Science Center, the public library and sporting events.

“It still feels like a normal family.”
At first, Alex hired one person for the middle of the day, when he would take the boys out on their “adventures,” but when Matt needed a 100-day hospital stay in 2010, a private-duty nurse came on board. They have visitors in the form of friends and some volunteer college students studying medicine, but during the evenings, the family is home alone, which is how they like it.

“I don’t feel anxious being alone with the three of them,” Alex said. “It still feels like a normal family.”

Liz’s diagnosis hasn’t taken away her personality, Cohen said, adding that she “used to get away with murder in high school,” thanks to her feisty personality and beautiful smile.

“She can still laugh, and her arm flares. That is something I don’t think they can ever take away from her— her twinkle,” she said.

Will is the extroverted twin, who loves to meet new people and asks them engaging, genuine questions. Alex recalled how the first question he asked a stranger was, “Tell me what you like most about yourself.”

“My life is challenging and I know that face adversity every day,” Will told foxnews.1eye.us. “I don’t mind facing it every day.”

Matt, who was diagnosed with autism, is quieter and struggles with social interaction, but can be verbal and engaging when connecting with people, Alex said. When the boys went to a pro wrestling match, Matt asked one about the tiny scratch on his finger.

“He’s a very sensitive guy,” his dad said.

Although Liz has more difficulty communicating than the boys, she tends to have less urgent needs than her sons and is often the last to be attended to, but she still keeps an upbeat attitude.

“She has weathered all these challenges and still has a radiant smile,” Alex said.  “I’d tease her, [saying] ‘It’s been a great 25 years, but the first five weren’t as good.’”

“It’s being silly, not drudgery.”
Matt and Will have an advanced form of Duchenne muscular dystrophy, and their chest and respiratory muscles are weak and atrophied, restricting their lung capacity and size. When the lower lobes of their lungs collapse, the airways collapse, causing secretions to form and build up, which must be eliminated daily through suction. A vibration device is another part of their pulmonary hygiene routine, with the goal of preventing the secretions from pooling, which will lead to infections. The brothers can’t rely on antibiotics, as overuse can lead to resistance.

“This particular kind of MD is very much progressive; it will get worse over time,” their pulmonary physician, Dr. Patrick Wright, told foxnews.1eye.us.

The boys also face skin wounds if they aren’t moved frequently, and weak heart function. Cardiac failure is often the primary source of decline for MD patients, Wright noted.

Every day after the twins wake up, they’re given their first feeding tubes of the day, then both go through a lengthy pulmonary routine to clear their lungs out, which takes from 9:30 a.m. until noon.

Alex tries to have a destination planned for each day, so the family— and their friends— go out around town. Throughout the day, Alex must keep the boys fed, help them go to the bathroom, and go through another hour-plus pulmonary care routine.

In the evenings, when the family is home alone, they like to watch wrestling on TV before their bedtime routine, which takes another two to two-and-a-half hours.

“It sounds like a whole lot of steps, a production, but it’s mostly listening to music and being silly, not drudgery,” Alex said, adding that Jimmy Buffett is one of their favorite musicians.

“He cares for his family with such love and patience … and truly prefers to do it all himself, but obviously he’s outnumbered and needs help,” Cohen said.

Alex has educated himself on all elements of his family’s care and even helped turn around Matt’s health after he was told it was time to let his son go during one particularly bad hospitalization.

Matt has faced numerous challenges in recent months including a bad infection that led to hospitalization, and his autism makes it difficult for him to control his behavior when he’s anxious. Wright is most concerned about Matt’s recurrent lung infections, which have led to recurrent toxic diarrhea from antibiotic use. Will has a higher level of neurological function but a weak heart muscle.

“I can’t stress enough how grateful we are.”
Whether the family is at home or out and about, they’re usually accompanied by friends, including their groups the Joy Friends, the Blondterage, and the Kick Butt Friends.

The Joy Friends was created in January 1998, by a group of supporters after the family wouldn’t let them do large fundraisers. Instead, the Joy Friends bring companionship, and dinner three times a week, among many things. The group was named in honor of Liz, who, when she could talk, always said, “Life’s a joy. Our life is a joy.”

The Blondterage is a group of about 38 women who see the boys regularly. Two of the women, who the family has known since 2006, happen to be blonde, and came up with the name, which is a play on “entourage.” The women go with the twins around town, attending Greensboro Grasshoppers baseball games and going bowling.

Twice a week, a smaller group of 18 to 20, the Kick Butt Friends— named by Liz— visit the family and help them do chores and run errands.

Many of the Joy Friends have been active since the group’s inception, and Sally Cohen still maintains the handwritten meal calendar. The meal volunteers, who now mainly cook for Alex, usually stay and visit with the family, bringing the outside world in, Cohen said.

“When Liz was first diagnosed, I remember she said to [her childhood friends]— she has such a feisty personality— ‘I want to know when you’re mad at your husbands, what your kids did right, wrong, what color you’re painting your house,’” Cohen said. “[She] wanted our conversations to be normal … she didn’t want people to shy away.”

Alex always has a fun plan for the boys, which in the past has included holiday parties— they celebrate Christmas multiple times a year— swimming and Zumba. The boys sometimes have whirlpool parties with the Blondterage, and a neighbor dresses up like a bartender and plays music.

Even with all that his family handles daily, Alex has kept his sense of humor and compassion, calling his friends when they’re going through tough and joyful times, throwing in a joke at the hospital.

“I can’t stress enough how grateful we are for all the help we have from friends, neighbors, people at church,” Alex said. “It’s just amazing how, through word-of-mouth, so many people are involved.”

“Everybody is drawn to the family.”
Executive producer Parker Williams grew up in Greensboro and was introduced to the James family by his mother, who is part of the Joy Friends. About two years ago, he met them and realized he wanted to share their story. He and his co-executive producer at Charlotte, N.C.-based Wheelhouse Media, John Allred, decided to make a video, something small to share with the James’ friends, but the project soon evolved.

“We realized how big a reach they had in their community, their infectious positivity. We decided to commit our time and resources to build a film we hoped would preserve their story,” Williams told foxnews.1eye.us.

Wheelhouse Media, which also includes co-producers Adam Colborne and Charlotte Cameron, is in full production mode now, combining their footage with the family’s home movies and photos from before Liz and Alex were married. They hope to have the film done by the end of the summer, but, as with any documentary— and with Matt’s health worries lately— setting an end date has been hard.

When they’re done, they plan to have a red carpet premiere in Greensboro, so the whole family— and their many supporters— can attend. Wheelhouse plans to donate the film to the National MS Society and Muscular Dystrophy Association to use for fundraising efforts.

“Without a doubt, Alex goes through more daily challenges than most people do in a lifetime,” Williams said. “It does make every day better, knowing there are people out there that are that good.”

The outpouring of support for the family doesn’t come from sympathy, Williams has observed but from pure enjoyment of their company.

“The reason to go there is to have Will charm you to death, Alex to tell a joke and make you laugh, to look Liz in the eye and communicate on a different level. I think that’s why everybody is drawn to the family, they go there and leave inspired,” Williams said.

“They could keep this story to themselves … they’ve got life and death on the line, and we’re calling to ask to have cameras around and it’s not an issue— they want this story to be told,” he continued. “They’ve trusted us with the most important thing in their life.”

Williams said Matt has come home from the hospital, but at this point the family is unlikely to take him back if he becomes sick again.

“They’re at that part of the journey for them,” he said.
                                                     
The twins have already outlived their original prognosis of age 15 to 20, but friends aren’t sure how much longer they’ll have. Cohen noted that in the past, doctors said they may have a chance to make it to 30.

Whatever the outcome, the family’s story and how they’ve affected their community will live on as their legacy, friends agree.

“God on earth for me is Alex James, and I mean that because when you’re around him, around that family, I just get this sense of being closer to God because they just have an incredible faith,” Cohen said. “He just makes every day so special for that family.”