By Jen Bakken
DELANO, MN Imagine one day a 19- month-old little girl is running around, playing and giggling, and a few days later, this same cute toddler is losing control of her balance and falling down.
It is difficult for any parent to think of their child suffering; in fact, it is every parent’s worst nightmare.
This nightmare has become a reality, and an ongoing battle, for Pat and Jill Russek since their daughter, Avery was diagnosed with Opsoclonus Myoclonus with Ataxia (OMS), an autoimmune disorder.
Avery is described by her mother as a charmer and “the funniest little thing ever.”
“She loves to go ‘side’ (outside). If we are out-and-about, she is saying ‘Hi!’ to everyone and giving them high-fives,” she said. “If you ask her who’s trouble, she raises her hand and says, ‘Me!’ You say smile and she gets the biggest grin and shows off all her teeth and crinkles her nose it’s super cute.”
Jill, a Watertown-Mayer graduate and daughter of Jane and Tony Bauer of Brainerd, and Pat, a Delano High School graduate and the son of Rose and Dave Russek of Delano, have two other children Ryan, 8, and Lexi, 5.
Their 5-year-old daughter has hip dysplasia, and they have been trying to catch up with the costs of her surgeries from a couple years ago. Now, there is the added expense caring for Avery.
During the first week of February, Jill Russek thought her daughter may have an ear infection, causing her balance to be off.
“Her ears checked out good and the doctor said she was fine,” she remembered. “A couple days later, it got a little worse, she was falling and running into things, so I called her regular pediatrician and took her in that day. She (the pediatrician) took one look at her and sent us down to Children’s Hospital to see a neurologist that same day.”
Within a week, several medical tests were performed on little Avery, and then sent to the Mayo Clinic and the University of Minnesota Medical Center for testing.
Avery was admitted to the hospital, where she spent a week. While there she suffered from shaking spells, involuntary eye movements, and gross lack of coordination of muscle movements.
Initially, a high-dose steroid was given intravenously, but this didn’t alleviate Avery’s symptoms. Next, IVIG infusions (Intravenous immunoglobulin) were performed and by the second day, she was up and walking again.
“IVIG infusion was explained to me as taking a thousand blood donors’ best antibodies and sending them through a purification process,” she said. “They are then infused into her (Avery) through two-day doses.”
Though the treatments are working for her, they only last a short time. Approximately every four weeks, Avery goes to Children’s Hospital and is hooked up to an IV for the treatments, which last four to five hours.
Avery’s IV is kept in overnight and at home, Jill becomes mommy and nurse when she has to flush the IV to keep it open. Then, they return to the hospital the next day for the same process.
“We love the nurses and they really enjoy Avery,” she said. “She always has the same room and the same nurses so she feels very comfortable there.”
Just after their youngest child’s difficult diagnosis, Pat was laid off from his position as an electrician, a company he had worked with for 15 years.
This made a difficult situation turn frightening for the Russeks.
Delano Elementary School rallies behind one of their own
Jill Russek has worked for Delano Elementary School (DES) for 11 years as a paraprofessional. She loves watching the students develop new skills throughout the school year, and feels she is fortunate to work with many amazing people.
Teachers and staff at DES feel just as fondly about Jill as she does about them, and have rallied behind her by planning a benefit.
“We wanted to find a way to help Jill and her family,” said Melissa Scott, DES social worker. “This is a really tough time for them.”
Jill and her family are humbled by everything DES and the community are doing for them.
“We feel very blessed that we have so much support from everyone, and we know we will come out of this stronger and better people,” Jill said. “Thank you is not enough, but it’s the best we can do for now.”
Cancer scare for little Avery and her family
Fortunately, cancer has been ruled out in Avery’s case, but the road the Russeks are traveling is still uphill.
“I just hope that these treatments continue to work, and we keep seeing the improvement from her,” she said. “It’s been hard on the whole family, but you know, as a parent, you’d move mountains to help your kids.”
Benefit for Avery Russek is this Saturday
A benefit for Avery Russek will take place Saturday, May 2, at the Delano American Legion from 8 a.m. to noon.
The benefit will feature an all-you-can-eat Dad’s Belgian Waffles, and take-outs are available.
Tickets are $10 for adults and $5 for children 10 years old and under. Tickets are available for purchase at the door or before the event at the Delano Elementary School office, or by calling Melissa Scott, at (763) 972-3365 ext. 4155, for a location near you.
There will be a silent auction consisting of many themed gift baskets, a handmade lap quilt, a variety of gift certificates, and more.
An account has been established at the State Bank of Delano, 1300 Hwy 12 Delano Crossings, Delano, MN 55328.
Donations will be accepted at the Delano Elementary School office and checks can be made payable to the Russek Family benefit.
All funds will be used to help cover mounting medical expenses for Avery and help to continue her fight.