Wis. boy with rare disease preps for Minn. surgery

Published 1:28 pm Wednesday, December 8, 2010

DARBOY, Wis.  — A 4-year-old Wisconsin boy born without the gene that binds skin together is heading to Minnesota to prepare for a stem-cell transplant that could save his life.

Doctors hope the operation later this month will strengthen Charlie Knuth’s skin. Charlie has epidermolysis (ep-ih-DER’-moh-LY’-sis) bullosa, which causes his skin to blister.

Charlie and his family left their hometown of Darboy for Minneapolis on Saturday. Trisha Knuth says her son’s treatment will include chemotherapy that will make him sick and cause his hair to fall out, but he’s excited nonetheless.

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The treatments could top $1 million. Wisconsin’s Medicaid office initially refused to pay the bill, but it relented after Trisha Knuth contacted lawmakers and the community rallied around Charlie.

The Post-Crescent of Appleton says the transplant will be Dec. 20.