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My Story

Kallie & her twin Maddie were born 9/20/05. Kallie was diagnosed on 5/22/06 with a rare genetic disease called Hurlers syndrome. She received a cord blood transplant on 8/17/06. Read her journal to get updates on her fight against Hurlers.

Donations can be sent to:Whitney National Bank Attn:Lori Connors Kallie McGuire Benefit Account

5200 Mounes St. Harahan, La. 70123

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Journal

Wednesday, June 10, 2009 11:17 AM, CDT

Kallie had clinic yesterday and her counts look great. I also talked to Dr Yu about her bone issues. Of course we knew as she grew and got older we would have to deal with the skeletal issues because transplant does not stop the progression of the disease in the bones. They have set up an appointment for Kallie to see an orthopedic next month. Kallie's journey is far from over, now we begin the next phase. Hopefully they will find a cure for MPS one day.

We are getting ready to head out on a vacation to the beach. We are looking forward to getting away and having some fun. The kids are very excited and ready to go.

Thanks to everyone for keeping up with our family and checking in on us. It means a lot to us.

God Bless & Love,
Janine

Angels and God watch over our Kallie girl !!!!!!!!

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