Welcome to SavingCase

After a number of very busy weeks, we've capped it off with the launching of Case's website - SavingCase.com. We hope to bring awareness to rare diseases in general and Hunter Syndrome and MPS/ML in particular, as well as provide a central point for fundraising, events, Case's latest news, and the new gear we've developed.

I feel like a jack of all trades lately - learning just enough to be dangerous about IEPs and special education, website development, TennCare and SSI, T-shirt design, etc. However, without the involvement of many talented people, my knowledge would just be "dangerous" as opposed to just enough of anything! I want to take this time in the inaugural post to send a multitude of thanks to those who are involved in all of these efforts, as well as the efforts to check in on us, show Case and the other boys special attention, pray for us, and just give general support. Without your help and prayers, it would be difficult to sustain what has become a marathon effort.

If you are new to our widening circle of Team Case, please feel free to catch up on all of his background and our roller coaster of a year at Case's caringbridge site -http://www.caringbridge.org/visit/casehogan. I haven't decided yet whether to continue updating his caringbridge along with this site or some combination. Time will tell.

The latest news consists of lots of things accomplished for Case! His IEP was completed after three long meetings with the local school. His placement involves remaining at his current school at least until the end of the summer! We are so pleased with the progress Case has made at High Hopes that it would have been so difficult to change directions at such a critical time in the cognitive stage of his disease, especially considering some of the cognitive issues we are seeing. Case will hopefully continue learning, including some alternative communication methods such as an ACD. Since kids with MPS (Case included) generally love technology, we are hoping this will be a rousing success!

I've been thankful for the challenge of learning about special education law and IEPs and I'm hoping that I can use this knowledge and my experience as a lawyer to help other families in this process. Thanks to all our friends who helped us in this effort of creating a good plan for Case.

Case and our other boys have also been approved for TennCare as secondary insurance! This is a huge answer to prayer given our very high deductible and certain things not being covered under our plan. The approval has literally just occurred, so we have yet to see how this will truly impact our situation, but we are hopeful it will be a great thing. It doesn't affect the current medical bills (which is how they qualified - in Tennessee, it is called the Medicaid spend-down option), but going forward, it may be helpful for equipment and therapies.

Along with the website, we are extremely excited to have completed the design for SavingCase t-shirts. We hope we've created a powerful shirt for awareness that will stir people to ask questions about MPS.

We're completing the packets for our first official fundraiser - running and walking the Country Music Marathon and we're excited for the event. We have several participants, but are still looking for more runners/walkers as well as "vicarious runners" who will get sponsors but get to avoid the arduous task of running that 13.1 or 26.2 miles! We're so pleased to get events set up that we can hopefully do each year, raising more funds for research as we go as well.

We're looking forward to hearing from more new friends now that Case's website is up and the article about Hunter Syndrome is appearing in the local paper. Case is such a joy to us and all around him that we look forward to telling his story and all the ways that God is using him to change our lives for the better.