The past few months have been a tough road for the Hosek-Eder family, but friends are pitching in to make the last part of Stillwater resident Sara Hosek’s life as comfortable as possible.
Sara, an 18-year-old Stillwater Area High School graduate, has been dealing with a rare illness called Alagilles Syndrome her whole life. She lost her older sister Brittany, at the age of 5 to the same illness. Alagille syndrome is a genetic disorder that affects the liver, heart, kidney and other systems of the body. It afflicts one out of every 100,000 live births.
“Sara’s just a kind compassionate person, such a sweetheart,” her grandmother Joan Eder, of Lake Elmo, said. “In school she helped out the special needs children a lot, and she’s just one of those people that you love instantly, but then again I’m a little prejudiced.”
According to Sara’s mom, Jenny, Sara has dealt with several complications from the disease throughout her life.
“Lately she’s gotten progressively worse. Sara does not have the effect (of the disease) on her liver, but she does have a heart defect,” Jenny said. “The arteries in her lungs don’t have high oxygen levels, and she’s had several CyberKnife treatments on her brain. We thought we were going to lose her in early October.”
Since October, Jenny has been on unpaid leave from her job, and Sara’s gone from being fairly independent to being completely homebound. She must use a wheelchair and have constant care around the clock.
“For Sara it’s really frustrating,” Jenny said. “She can’t go up to her room. Our house isn’t wheelchair accessible, and she lives in our living room. She wants to be independent but she can’t be.”
Jenny said she and Sara have been overwhelmed with the outpouring of support from the community that they’ve gotten since Sara’s best friend Taylor and her mother Donna Smieja have organized a benefit, scheduled for Jan. 25.
“The whole community is rallying around us, and people I don’t even know are calling my parents and asking what they can do to help, asking them, ‘What do you need?’ It kind of overwhelms me,” Jenny said. “It’s been me, my mom, and my ex (Ron Hosek) taking care of the girls for so long. I’m stretching, and I’m starting to trust people to help me, like the (personal care assistants) we’ve been interviewing today.”
Jenny is able to go back to work soon, but the benefit will help the Hosek-Eder family with nursing care and other expenses not covered by insurance. She said the outpouring of support she’s had throughout the past few months has been wonderful, and she is especially grateful for her parents, sisters, relatives and teenage son, Hunter. She said they do everything they can to help the family in their free time.
“I don’t know what I’d do without them,” Jenny said. “People ask me how I cope, and you just have to continue on the best that you can. I’m not the type of person to think about what I need. I just am able to get back to work, and since we’ve had no income for so long, this benefit will help to pay for the helpers and let Sara spend her last days in the house. Everything is less important than Sara right now, even me.”
The benefit for the Hosek-Eder family takes place at the Knights of Columbus Hall on 1910 Greeley St. S. in Stillwater on Saturday, Jan. 25 The event runs 4-10 p.m. and has a bingo theme.
“Sara’s a bingo fanatic,” Jenny said. “She used to play bingo all the time before she got really sick. Her grandparents always told her that when she turns 18, they’d take her to bingo, so she went with them every week, had that one-on-one time with her grandparents, and had that sense of independence.”
Sara plans to be the bingo caller for the first hour of the benefit.
Tickets for the benefit cost $8 in advance, $10 at the door and $5 for kids 12 and under. The evening features bingo, food, entertainment and a silent auction and raffle. Auction items are needed. The family has said that any help is appreciated whether people attend the benefit, make a donation or say some prayers.
For more information, to buy tickets or to donate auction items, email [email protected]ol.com or call Denise and Taylor at 651-485-4781 or Jessica Eder Schwarting at 651-307-0047.
If you’re unable to make it to the benefit but would like to donate to the Hosek family send donations to:
The Sara Hosek Family Benefit Account
First State Bank
5891 Neal Ave. N
Oak Park Heights, MN
Contact Avery Cropp at [email protected]