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Community rallies around Milw. family facing two terminal diagnoses

MILWAUKEE (WITI) — The past three years have been a whirlwind for the Ustruck family, coping with issues they never imagined.

“It’s made us better people, better parents, better friends, better family,” said Bill Ustruck.

It all started when Missy and Bill’s second born son, Sully, had a seizure when he was just a toddler.

“You start a life and then you have kids and everything is going wonderful and then one day you have a seizure and our world has changed ever since then,” said Bill.

After years of treatment for epilepsy, doctors discovered Sully had a rare neurological disorder called Batten Disease.

But Sully wasn’t alone, another Ustruck boy, four-year-old Colty, also has the disease.

“The day before Sully came home from his first surgery Colty had a seizure,” said Bill.

The life expectancy of children with Batten Disease is just 6 to 10 years.

On Monday night, Missy and Bill had the unbearable task of saying goodbye to 6-year-old Sully.

“The doctor’s like maybe he just wants you and Missy alone with him and sure enough everyone left and it happened,” said Bill.

Now friends and family are stepping up to help the Ustrucks have a Merry Christmas.

They’re asking for help to buy Christmas gifts.

“We want them to know that Sully and Colty’s struggle and fight are changing lives of people who they’ve never even met,” said Ustruck family friend Kari Dawson.

They’ve received an outpouring of support from people they haven’t seen in 20 years to strangers across the country who’ve heard their story.

“There’s not enough words to let them know how appreciative I am,” said Bill.

Adding a little joy during a difficult time.

A donation drop-off and gift wrapping party is being held for the Ustruck’s this Saturday at the West Allis Buffalo Wild Wings from 11am – 2pm.

The family is registered at Target, Kohl’s, and Toys R Us. You can also make a financial donation to the Sullivan Ustruck Trust Fund at any PNC Bank.

If you’d rather send a monetary donation, send to:

Mitchell Elementary School
c/o Ustruck Fund
10125 W. Montana Ave
West Allis, WI  53227

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1 Comment

  • Carolyn Gilley

    Wanted to let the family know my prayers are with them and to let them know that my daughter is also terminal and two years ago we contacted Make-a-wish and took our family to Disney was the best thing we ever did so please contact your local Make-a-wish chapter they can help your family have a wonderful vacation or anything that you can dream of!

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