Honorable Steve Kagen, M.D.

Wisconsin's former 8th District Representative

January 4, 2007 to December 22, 2010

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Lawmakers work for Darboy boy’s treatment coverage

Posted on Oct 1, 2010 by


Lawmakers work for Darboy boy’s treatment coverage

WFRV News- 9/30

Several public figures have stepped forward to offer the Knuth family aid after they were unable to get Medicaid to pay for a potentially life-saving treatment.

Congressmen Dr. Steve Kagen, along with other legislators, has reached out to the Department of Health Services on behalf of 4-year-old Charlie Knuth.

Knuth was abandoned when he was one week old at Milwaukee Children’s Hospital with Epidermolysis Bullosa.

EB is a painful rare genetic disease. Only 2 to 4 children in 100,000 are inflicted with the condition.

Symptoms are similar to second degree burns all over the body. Patients can also have ulcers and internal blisters as well.

“If this young child does not get the therapy that he needs..then his chance of living is very very slim,” Kagen said. “Why would we not offer him a chance to live when 10 other children have been cured. Why would we say no to this child, condemning him to death.”

State Senator Alan Lasee has also reached out to DHS. “Decisions need to be made now,not tomorrow, not next week. It’s really disgusting. I will raise high holy hell if I don’t get a call back tomorrow.”

Kagen says 10 children with Epidermolysis Bullosa have been treated with stem cell transplants, and a doctor in Minnesota says Charlie would be a good candidate for the procedure.

If Medicaid does not cover the treatment, it could cost between $500,000 and $1 million. The Knuths are hoping that with the support of law makers, Medicaid officials will change their decision before the family makes a formal appeal.

If you would like to help Charlie and his family please send all donations to the address below:

Charlie Knuth Benefit Fund

Community First Credit Union

PO Box 1487

Appleton, WI 54912-1487

Hilary Golston reports.



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