Miracle Michael loses battle against rare tissue disease
BY JANE LELUGAS STAFF WRITER
Beth and John Shultz didn’t get the miracle they hoped for.
Their young son Michael died Saturday at Central DuPage Hospital, ending his eight-month fight against a rare connective tissue disease called osteogenesis imperfecta.
Michael was born with the most severe form of OI, which left him vulnerable at the slightest touch to bone fractures. Michael endured much pain, and his condition often plummeted, but his family marveled at how he rallied time and again when there seemed to be little hope. They called him their “Miracle Michael,” and his story touched many people in the Naperville community and beyond.
But the end came Saturday afternoon when Michael couldn’t rebound from surgery performed the day before to correct problems with a central line attached to his heart.
Beth said she was five minutes away from doing some Easter shopping for her 4-year-old son, Anthony, when she received the call from the hospital staff that Michael’s situation had deteriorated.
Although she and John had been through this drill before, Beth said she knew this time it was different. John was on his way, and Michael held on just long enough for his father to arrive and say “I love you” one last time.
“My head tells me he’s no longer hurting, but my heart has never felt such pain,” said Beth, who doubts she’ll ever be able to make sense of the plight dealt to her son.
“He’s at peace now, but it’s really sad to lose him,” said Michael’s aunt, Marla Isaacs.
Beth said Michael just had been accepted into an OI experimental treatment program at Shriners Hospital. Although time ran out for Michael, his parents want to offer hope to other children suffering from the disease.
On Aug. 5, which would have been Michael’s first birthday, the Shultzes are planning a golf outing to raise money for OI research. Sports celebrities have been invited to the event Michael’s parents began organizing six months ago. Beth said they’d like to make the golf benefit an annual event.
They also plan to turn the Baby Miracle Michael Fund, established in November at Harris Bank in Naperville, into a memorial fund.
“Hopefully, with what we learned through Michael, someone else won’t have to go through what he did,” Beth said.
While Michael’s family mourns his loss, they also celebrate the gift he gave them.
