Wisconsin girl's open-heart surgery; 3-year-old has rare disorder

WATERTOWN, Wis. - She has been a fighter since birth. 

A 3-year-old Watertown girl is preparing for her second open-heart surgery. She will be traveling across the country in March. 

There is a lot to be learned from the steps Elsie Steinbach has taken. 

"She is sweet and she is spicy when she wants to be. She is always on the go, always moving," said Alexa Steinbach, Elsie's mom. 

Alexa Steinbach

Elsie is staying on course as she reaches new heights – learning to walk. Each day, for four hours, Elsie is working out at CI Therapies in Verona – outside of Madison. She is building strength for what is next. 

"Getting her as strong as possible before surgery that way her body is ready for what’s to come," Alexa said. 

Elsie Steinbach

Elsie was both with 22q deletion syndrome – a chromosomal disorder. It caused a rare heart defect. Elsie spent her first four months in the neonatal intensive care unit at Children's Wisconsin. In April 2021, she traveled to California – undergoing a highly-specialized 18-and-a-half hour open-heart surgery at Lucile Packard Children's Hospital at Stanford. 

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"She takes it all in stride. She’s taught me more about hard work and perseverance than any adult that I’ve ever met," Alexa said. 

Elsie Steinbach

Nearly three years after her first surgery, Elsie needs another. In March, Elsie and her parents will return to Palo Alto, California. 

"After spending the amount of time we did with her in the hospital the first time every day that we have with her is just such a huge blessing," Alexa said. 

Elsie Steinbach

Work at physical therapy has built Elsie's strength in more ways than one – as she pushes her little body. 

"She thinks she’s playing. We’re seeing the hard work she’s doing every day," said Sam Oehler, CI Therapies. 

Sam Oehler

Oehler is part of a team working with Elsie. 

"To watch her put in that effort every single day is outstanding," Oehler said. 

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"She’s a very special kid who’s been dealt a tough hand, but she is pretty amazing," Alexa said. 

Elsie Steinbach

How you can help

Pig Out for Elsie 2.0

There are huge costs that come with this surgery – and the family is asking for some help. A BBQ cookoff will take place on Saturday, Feb. 3 at the Fairview Sports Bar & Grill (711 W. Racine Street) in Jefferson. Everything begins at 11 a.m. that day.

Consider a donation

If you cannot make it to Feb. 3 event, there are several other ways to donate to Elsie's cause: 

• Premier Bank in https://www.fox6now.com/tag/us/wi/jefferson-county/jefferson has a dedicated account. Donations may be mailed to: Elsie Jean Steinbach Kickstart My HeartPremier Bank320 S. Center AvenueJefferson, WI 53549NOTE: Make checks payable to "Elsie Jean Steinbach Special Needs Trust"
• Elsie Jean Steinbach Kickstart My HeartPremier Bank320 S. Center AvenueJefferson, WI 53549NOTE: Make checks payable to "Elsie Jean Steinbach Special Needs Trust"
• Donations may be mailed to a dedicated PO Box: Elsie Jean Steinbach Kickstart My HeartPO Box 294Jefferson, WI 53549NOTE: Make checks payable to "Elsie Jean Steinbach Special Needs Trust"
• Elsie Jean Steinbach Kickstart My HeartPO Box 294Jefferson, WI 53549NOTE: Make checks payable to "Elsie Jean Steinbach Special Needs Trust"
• Donate using Venmo or PayPay: operation.elsie@gmail.com @kickstartelsiesheart
• operation.elsie@gmail.com
• @kickstartelsiesheart