November 29, 2021

‘Let’s Do It For Stewart’ Caribbean cruise, big prizes for raffle to benefit Geneva baby with rare disorder

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Screen Shot 2016-05-30 at 8.20.18 AMBy MARGIE NETZEL For the Star Beacon

John Krause holds 23-month-old son Stewart Krause, who is on oxygen constantly and needs a specialist’s medical intervention to manage Androgen Insensitivity Syndrome and lung disease. A raffle fundraiser with a Caribbean cruise prize is going on now to benefit Stewart and help him get the care he needs.

GENEVA – Stewart Krause wants down.

This energetic 23-month-old wants to walk, or run, across Mary’s Diner. He waves shyly to the people at the table across the room. He kicks his dad, John Krause, and arches his back.

Down. Now.

John Krause handles Stewart’s wiggly antics with humor, putting the baby’s feet on the floor and picking up the oxygen tank the follows Stewart everywhere he goes.

Born premature with birth defects and a cascading series of health problems and medical conditions, Stewart is on oxygen every minute, and spends weeks at a time in the intensive care unit at Rainbows and Babies Children’s Hospital.

“Stewart was born with ambiguous genitalia and his body does not want to produce testosterone. Then he developed hypothyroidism, and we were dealing with that, and then suddenly he started having serious breathing issues during one of his hospital stays,” Krause said. “His diagnosis is Androgen Insensitivity Syndrome.”

After a lung biopsy and many tests, doctors determined that Stewart doesn’t have Cystic Fibrosis, though his symptoms mimic the disease. He is also fed exclusively by G-tube.

“He just keeps getting sick,” Krause said. “We spend long stints in the hospital. In February, he got pneumonia so bad that he had to be put into a medically induced coma.”

Krause said he and his wife, Maggie Krause, do everything they can for Stewart, and are hoping to see a specialist in rare lung diseases at the Monroe Carell Jr. Children’s Hospital at Vanderbilt in Tennessee.

Krause, who works as a manager at Mary’s Diner in Geneva, said he and his family are struggling to meet all Stewart’s needs.

The “Let’s Do It For Stewart” raffle, sponsored by Pure Joy Spa on South River Road in Harpersfield Township and 1024 Tanning Salon on South Broadway in Geneva is going on now. The grand prize is a five-day Caribbean cruise for two (airfare not included). Second prize is $500, and third prize is a Pure Joy Spa and 1024 Tanning package worth $300. Many prize baskets are also included as secondary prizes.

Tickets are available at Mary’s Diner on East Main Street in Geneva, Pure Joy Spa and 1024 Tanning for $10 each. Winners do not need to be present to claim prizes. The raffle will continue until all tickets are sold.

The family also has a Go Fund Me account at https://www.gofundme.com/29ks2x2c#.

“I can’t say how much this fundraiser and how much the donations mean to me and my family,” Krause said. “Between the travel to and from the hospital, medical expenses and everything else, we have struggled. We were never ones to ask for help, but we need help now. We are so blessed to be so supported by the community. The people at Pure Joy Spa and 1024 Tanning have been amazing. We are so thankful to have them in our lives. It means so much to us that people have opened their hearts to us.”

Krause said despite his medical issues, Stewart is every bit a 2-year-old marvel.

“Stewart loves to be outside,” he said. “For a year and a half he wasn’t allowed to go outside and play, so he just loves it now. He’s a real daddy’s boy, too. This may not be how we anticipated being parents, but we love Stewart so much and he has changed our lives completely.”

Krause said his son is an inspiration, showing more strength than anyone he has ever known.

“Even with everything that goes on, he always has a smile on his face. He is so strong. Stewart has redefined strength and courage for me,” he said.

For more information and updates on Stewart, or to donate to his medical fund, visit the Go Fund Me page. To volunteer to hold an event or fundraiser to benefit Stewart, email [email protected]

IMAGE: MARGIE NETZEL For the Star Beacon John Krause holds 23 -month-old son Stewart Krause, who is on oxygen constantly and need s a specialists medical intervention to manage Androgen Insensitivity Syndrome and lung disease. A raffle fund raiser with a Caribbean cruise prize is going on now to benefit Stewart and help him get the care he needs.

For more on this story go to: http://www.starbeacon.com/community/neighborhoods/let-s-do-it-for-stewart-caribbean-cruise-big-prizes/article_8ce32d72-061a-511a-8c42-fed608798f61.html

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