Mother, son confront rare illness

SACRAMENTO, Calif. — For Mitch Ball, breakfast is a dizzying array of medication and cans of high-protein liquid formula, poured or pumped into his stomach through a tube.

Afterward comes a 20-minute breathing treatment, then the grooming and the cleaning of the tubes and other circuits that keep the 24-year-old Citrus Heights, Calif., resident alive.

In what seems like an exhausting three-hour ordeal each morning, Heidi Miller, Ball’s mother, crushes pills, operates medical equipment, feeds Ball and bathes him in bed.

Mother and son consider the tasks part of a daily routine since last fall, when Ball’s muscle-degenerating illness worsened, forcing Miller to quit her physical therapist assistant job to care for him.

With the household income almost halved, Miller, a divorced single mother of two young men, suddenly found herself in a tenuous financial situation and two months behind on her mortgage payment. Ball’s 19-year-old brother Brett is in college.

The family is not yet in danger of losing their single-story home, which is fitted with ramps and roll-in showers to accommodate Ball’s needs. But Miller said she just can’t keep up, especially with hefty bills that include a $470-a-month payment to maintain health insurance through her former employer. The house is also in need of repairs.

The situation prompted Amy Bush, Miller’s friend, to mobilize a fundraiser. Bush, a vice president of a mortgage firm, had raised Ball’s service dog, which Ball received a year ago from Canine Companions for Independence, a nonprofit organization.

Miller initially struggled with the idea of a fundraiser for her and her son.

“There are so many people out there who need help,” she said.

Ball was diagnosed at the age of 4 with Duchenne muscular dystrophy, a genetic disease that wastes away the muscles over time. Those afflicted with the illness rarely live past the age of 30.

By 8, Ball was in a wheelchair. At 24, Ball can barely move his body. He has just enough strength to drive his power wheelchair and move a computer mouse.

Last year, Ball’s breathing and swallowing muscles started giving way. He underwent a tracheotomy and feeding tube surgery, and now relies on a ventilator to breathe.

Her son’s need for round-the-clock care limits Miller’s ability to go back to work.

Miller has repeatedly sought a bank loan modification that would lower her monthly mortgage payment of $2,226 by a few hundred dollars, but without success.

Miller wrote the bank a letter in February, explaining how the surgery last August and Ball’s new reliance on a ventilator have altered their financial situation.

“In the last couple of months my life has changed completely with my son’s illness,” Miller wrote. “Prior to the most recent changes in my son’s health, I was able to work full time and provide for my family.”

As an in-home caregiver, Miller receives about $2,800 from the state each month, an amount that will soon be reduced with the state budget cuts. Moreover, Miller doesn’t get the state benefit when Ball is hospitalized.

“This disease is unpredictable and you never know when there will be a need for Mitch to be hospitalized,” Miller wrote.

Bush said Nfinit Solutions, a real estate consulting firm, is working for free to help Miller negotiate with Bank of America on the loan modification.

A bank spokesman, Rick Simon, said the request is under review and the bank is hopeful for a “possible workout.”

Meanwhile, Miller said she’s being hit with penalty fees for being late on her mortgage payments.

Laden with the financial stress, Miller said she has lost weight.

But if Miller was overwhelmed, she didn’t show any signs of it on a recent day, as she busied herself with Ball’s morning care routine.

Ball lay in his bed under a blue-and-white comforter, while Lynelle, the yellow Labrador service dog, lazed at the end of the bed, snoring every so often as she dozed off.

While his mother feeds and treats him with medication and machines, Ball watches “The Price Is Right,” a television game show. He joined contestants in guessing the price of items. Ball said he wants to get on the show, either as a spectator or a contestant.

In April, Bush offered Ball and Miller a vacation at her time-share resort near San Diego. Ball said they were able to get tickets to the show. But to attend the show, they had to arrive early in the morning, giving them no time to complete the morning routine.

Ball said he was slightly disappointed, but there was so much “other fun stuff to do on our vacation it was OK.”

Also, “there are other harder things I have to deal with,” he said.

One afternoon, Ball met with a counselor at the state’s rehabilitation center to see about getting a job.

“I wanted something in graphic design because I’m very artistic, and anything to do with computers,” Ball said.

Ball attended an art and new media course at American River College briefly, before it got too difficult for him to paint or design.

A van Gogh fan, Ball even painted a replica of one of the artist’s most popular works, “The Bedroom at Arles,” which hangs in his bedroom, along with a copy of “Starry Night.”

The job counselor said workers’ compensation will not cover a caregiver if Ball is hired, which might hinder Ball from getting a job.

Still, Ball remains optimistic that something will work out.

Ball and his mother said the period following his tracheotomy and feeding tube surgery, after he came home from a two-month stay in hospital, was one of the most trying.

The thought that he was always going to be sick and that he would always have to be on a ventilator got to him.

“I felt very hopeless,” Ball said. “I would cry at the drop of a hat.”

Relying on his Christian faith and a psychiatrist’s help, Ball said he’s overcome his depression and is learning to take things in stride.

On his blog, Ball describes himself as a typical guy with an atypical body.

“No, it’s not covered in colorful tattoos or piercings in bizarre places,” he writes.

“In spite of all the challenges I face day to day I live each day to the fullest and look forward to the future,” he writes on his blog. “It isn’ t always easy but having a positive outlook is something I strive for everyday.”


If you would like to help Mitch Ball and his mother, you can send a check made out to Amy Bush/APM c/o the “Mitch Ball Gift Account,” 3000 Lava Ridge Ct., Suite 200, Roseville, CA 95661.