The first Lewis Palooza benefit concert will be held Friday, Aug. 1.

It will be held at the rural Austin residence of Darren Lewis and his wife, Lindsay Leif.

The event is the result of one brother’s sympathy for another and the fate of 2-year-old Jett Lewis, son of Brett and DeeDee Lewis and a victim of Prader-Willi Syndrome.

Jett’s mother, a native of Scotland, tells the story best of her son’s disease and her family’s predicament.

“This is a complex life threatening syndrome affecting appetite, growth, metabolism, cognitive function and behavior,” the mother said. “Our son, Jett, was diagnosed with this syndrome at two weeks of age. We are so proud of him and his accomplishments to date.

“As infants, babies with PWS typically show no interest in eating and have difficulty sucking, breathing and swallowing,” Lewis said. “This is known as ‘failure to thrive’ stage.”

According to Lewis, the hallmark characteristics of PWS typically begin around ages 3 to 5.

They include an insatiable appetite that cannot learn to be controlled because of a dysfunction of the hypothalamus region in the brain.

In addition, there is a rapid weight gain on few calories because of a malfunctioning metabolic system. Therefore a closely monitored diet must be a maintained to restrict calorie intake.

Those with PWS need strict external controls, including access to food, “possibly to the extent of padlocking food,” the mother said. “This may be necessary as a life-saving intervention.”

The disease can be remorseless.

“Children as young as three have died of weight-related problems,” she said. “These problems are life-threatening and include perforation in the lining in the stomach from sudden eating binges.”

The mother’s goals — after taking the best care possible of her family — are to “raise funds so that researchers can find a cure for my son. Finding a cure for hunger will not only help Jett to live a normal life but could help millions of people dealing with obesity.”

Secondly, Lewis wants to “spread awareness about the disorder so that people with PWS can be accepted and understood in the community. Prior to having Jett I had never heard of Prader-Willi syndrome.”

She hopes to take Jett-steps toward reaching those goals at the Lewis Palooza Aug. 1.

Brotherly love, understanding

Darren Lewis and Lindsay Leif have three children.

“Brett and DeeDee are great parents,” said Darren, who owns and operates Lewis Painting. “They are so attentive to Jett’s needs; particularly DeeDee, who has had to make a lot of sacrifices for her son.”

“We wanted to do something to help,” Darren said.

DeeDee was active in May, during the Prader-Willi Syndrome Association awareness efforts.

She is used to telling the couple’s story.

“Our initial reaction to discovering Jett had the Prader-Willi Syndrome was shock,” the mother said. “When we got over that, we went to work. He needed physical therapy, occupational therapy, a special diet, drugs … everything.”

Brett is a software writer and DeeDee is a software support manager. They live at La Crosse, Wis.

The couple have had extraordinary responsibilities thrust upon them. Simply achieving balance is a challenge; Brookelyn has her needs, Jett his and the couple theirs.

“You go on,” she said. “That’s what we do. You try to live just as you would have if this wouldn’t have happened. It’s a day-to-day thing.”

Hog roast, then music

The Lewis Palooza benefit concert will take place on the Lewis-Leif residence 5 miles north of Austin along U.S. Highway 218 North or two homes past the former Lansing Corners intersection.

The hog roast begins serving at 5 p.m.

Local music fans’ favorite Split Top (also known as the Bissen Brothers) take the stage at 7 p.m. followed by one of the Upper Midwest’s hottest bands, Summit Avenue.

Tickets are $10 for both the hog roast and the concert.

Free-will donations will also be accepted.

Brett and DeeDee — plus a sister of the mother’s from Scotland — will be there with their children, Brookelyn and Jett.

The benefit is to promote awareness for PWS. All the proceeds with go to the PWS Foundation.

“Jett is a very special little boy who has taught us so much about ourselves this past two years,” DeeDee said.

“We are fortunate for an early diagnosis, along with a handful of specialists and daily therapies,” she said. “The biggest factor in our success has been the growth hormone therapy, a daily injection that he will need for the rest of his life,” she said. “Although we are not experiencing the food seeking issues at this time, we know that the road ahead will be challenging for him as the second phase of this syndrome emerges. Can you image still feeling hungry after eating a Thanksgiving dinner?”

To learn more about PWS visit www.pwsausa.org.

For more information about the Lewis Palooza event or to purchase tickets or make a donation, contact Keith Leif at 219-1760 or Lindsay Leif at 433-0025.