Tim and I have a few resources that we rely on for all kinds of things. One great resource that we lean on a lot is Texas Parent to Parent. Each year TxP2P teams up with OI (Osteogenesis Imperfecta) to sponsor the Walk-Hop-n-Roll. These are both great organizations. We don’t do our own team. It is too hard to plan ahead for stuff like this with Casey. We are happy to support other teams though. If you are interested in learning more, or contributing here is a link to Daniel’s team.
Daniel has OI and his mother is part of the TxP2P staff. Even though the diagnosis is nothing alike, the symptoms of Daniel and Casey are fairly similar. Over the years we have shared many nurses, doctors, stories, etc. He’s a really neat kid, and his mother has helped us answer many Casey questions.