NISSWA— Al Zappa made a promise to his wife Stephanie that he intends to keep.
Stephanie, along with her brother, Joe Sullivan, suffer from Huntington’s Disease, a degenerative illness that affects the way they walk, talk and process information. As their HD progresses, both Stephanie and Joe will lose their ability to live independently.
“There’s nothing for us in Brainerd,” Stephanie said of the care available to those living with HD. Joe’s HD has progressed far enough that living alone, even with in-home care, has become a hazard. “He’d end up in the cities, and so would Steph,” said Al Zappa of the care required. “I promised her I’d never let that happen.”
Stephanie was diagnosed with Huntington’s Disease at the age of 19, but didn’t start showing symptoms of the illness for more than a decade. Six years ago, she was forced to stop working. Stephanie and Joe’s mother, Connie, also has HD.
While the most progressed stages of HD require patients to rely completely on the care of others, Stephanie said assisted care facilities are not typically set up to handle HD patients, or won’t accept them because of the danger their symptoms can present to other patients. As HD chorea, a loss of control over voluntary movement, progresses movement can become violent.
HD symptoms present differently in each case. For Stephanie her balance and speech seem to be deteriorating more rapidly. For Joe, HD affects his ability to process information and has taken a toll on his sense of pain.
Last winter, Al found Joe outside with frostbitten ears and completely unaware of the damage the cold had done to his body. “We have to get him in with us,” Stephanie said.
Stephanie and Al have conservatorship over Joe allowing them to make decisions in regards to his care. “He’s my best friend,” Stephanie said. “He’s my partner in crime.”
Al, a contractor, and owner of Whispering Pines Construction in Breezy Point, is working to build an addition to his and Stephanie’s home in Breezy Point so that Joe can live with them. The Zappas’ goal is to have Joe in their home by Feb. 1.
Eventually, as her symptoms progress, Stephanie will move to the addition as well.
Al said the home addition includes two bedrooms, a bathroom, a kitchen and is completely handicap accessible. The total cost of the renovation is estimated to reach about $81,000.
The Zappas said area contractors have been generous in donating time and supplies; including paint for the entire addition and flooring. “Everything else is at cost,” Al said. “But cost is expensive.”
To help offset the burden, Ye Old Pickle Factory in Nisswa is conducting a benefit Saturday with all proceeds going to the Zappas to help subsidize the cost of the addition. The event will include a bake sale from noon to 4 p.m. and beer and wine tasting with hors d’oeuvres and food from 5-7 p.m., and a live DJ after 7 p.m.
“It’s going to be a full day,” said Terry Wallin, manager of Ye Old Pickle Factory. Wallin said he and Al have known each other for 26 years and reconnected recently when Al did work on Terry’s home.
“Terry is a godsend,” Stephanie said.
“It’s easy,” Terry said of hosting the event. “We have plenty of room.”
The event will include a silent auction throughout the day. Al said they have had a great response in donated auction items but are still looking for some big ticket items.
The benefit is open to the community and tickets are available with a suggested $20 donation. With snow predicted for the weekend, Terry said: “That means people have nothing else to do but come here and spend money.”
Stephanie said she has been overwhelmed with the support that has already come in, both in monetary support and donated food and auction items for the event. “I can’t believe the generosity of people,” she said. “Without it Joe and I would be in the cities.
“We’re just so thankful.”
SARAH NELSON KATZENBERGER may be reached at 855-5879 or firstname.lastname@example.org.