Seidling_Family

Ivy Lillian is a 15-month-old girl with a rare genetic disease called WAGR syndrome, which affects her eyes and her kidneys. Ivy is pictured above, at left, held by her mother, Shawna Seidling, along with Ivy’s father, Joey Palumbo, who is holding Ivy’s brother, Eli.

 

Photo courtesy of Magnificat Photo Co.

Ivy Lillian Palumbo was born with a rare genetic disease called WAGR Syndrome, and she will likely need a kidney and face other medical challenges before she is eight years old.

The Chetek Wine Walk, on Thursday, Aug. 22, from 4–7 p.m. is being held for her benefit, with proceeds being donated to her family to help with ongoing medical costs and related expenses as they monitor and treat Ivy’s disease.

Ivy is the daughter of Shawna Seidling, owner of Just Imagine Floral & Vintage Treasures, and Joey Palumbo, owner of Midwest Automotive, in Chetek.

The acronym WAGR stands for Wilms tumor (tumors of the kidney), aniridia (absence of the colored part of the eye), genitourinary anomalies and mental retardation. For Ivy, the disease is caused by 61 missing genes in her chromosomes.

“It’s such a rare thing,” Palumbo said. There are around 450 known cases of WAGR Syndrome throughout history. Only one in a million children are born with WAGR and the disease is so rare, doctors often don’t know how it will affect each child.

Some children are more severely affected by it while others are not. One child with WAGR might not be able to talk, while another one go on to attend college, Seidling said. It has a wide range of symptoms and severity.

But generally, WAGR Syndrome carries a high risk—roughly a 70 percent chance—of growing benign tumors in the kidneys before a child reaches 8 years.

Palumbo noted that Ivy was fortunate to not have tumors when she was born. But that could change and that is why they are monitoring her diet and giving her supplements, such as CBD oil, to inhibit any potential tumor growth and help her development.

Every three months, they go in for ultrasounds, blood tests and urine tests so doctors can check for tumors in Ivy’s kidneys. Doctors say she will likely need a kidney transplant before she is a teenager.

“She’s doing very well,” Palumbo said. Ivy sees three physical therapists to see that her developmental milestones are met and she is progressing as she should. She is close to walking, he added.

Seidling said Ivy can see fairly well, but her sight is limited. Things are likely a blur for her, due to her eye condition and lack of coloration.

They expect Ivy may have to learn braille one day or have a service dog. She isn’t legally blind, but her eyesight is 20/80. She can see lights and crawls toward any light source. She also loves to feel textures and objects.

“She loves bath time,” Seidling added.

“She’s very happy. She loves to yell, squeal and laugh,” Seidling said. Ivy loves her brother, Eli, too, but “She’s definitely a mama’s girl.”

Seidling said Ivy loves to chew on and play with rhubarb, which they harvest from Seidling’s mother’s garden. Ivy also loves fresh tomatoes, but doesn’t play with toys much.

For the first three months of her life, Ivy had 12 doctors who ran various tests to find out more about her condition.

Today, she only has five regular doctors—a geneticist, an eye doctor, an neurologist, a kidney specialist and her regular doctor.

Early on, they had a cardiologist who monitored one of Ivy’s heart valves to make sure it opened and closed as it should. That appears to be working normally.

Ivy was born at Sacred Heart Hospital in Eau Claire. On average, they travel once a month to Eau Claire, Chippewa Falls or Madison for various doctor appointments.

For longer trips to Madison, it is not just the cost of travel, but also the time lost at work that impacts their pocketbooks, Seidling and Palumbo noted.

For now, they are monitoring Ivy’s condition and letting her do normal baby things, Palumbo said. If her condition gets worse, there will be more tests and screenings.

Palumbo and Seidling hoped that people would be encouraged to come out to the wine walk on Aug. 22. They are always happy to chat with people about Ivy’s condition and answer questions, they said.

Family members will help run Just Imagine on Aug. 22, allowing Seidling, Palumbo, Ivy and Eli to attend the event.

Wine walk T-shirts, sweatshirts and tote bags will be for sale at participating businesses prior to the wine walk. More information about the event can be found in the ad on Page A10.

Donations can also be made with a check made out to Chetek Chamber of Commerce, ATTN: Irises for Ivy and sent to Chetek Chamber of Commerce, PO Box 747, Chetek, WI 54728.

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