Susan, I saw that you live in Jax and have 2 children with hurler and come to U of MN. I'm so happy to hear that you've had great outcomes! Yay!!!
Sounds like we should definitely keep in contact, but I couldn't access your email address via Gracie's guestbook. Can you please email me at mgkelly@gmail.com so I can have Sarah contact you? I'd love to know where you go in N. FL for treatment and routine check-ups, etc. It would be great to tap into any resources with Hurler experience in N FL. Thanks!
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