I don’t have too much to update, but I’m in a bit of a writing mood, so I thought I’d tell you about the little that is going on. Dr. Stockler emailed today (yes, on a Sunday!!) and she doesn’t seem concerned about MSP not paying for CBT’s. She said that BCCH is a research hospital, so CBT’s could quite possibly be paid for through research grants or something like that. I am going to call the transplant doctor at Children’s tomorrow to see if I can find out a bit more.
I also want to give a shout out to 3 awesome families we have met in the MPS world. One family, the Buck-McFadyen’s, have a son, Isaac, who is the same age as Trey, and who has MPS VI. They also have a son the same age as Avery. They live in Ontario and we will be visiting them on our way home from North Carolina. If you want to check out their website, it’s: www.theisaacfoundation.com.
Another family is Amy, Matt, Aiden, and Owen. Owen is almost 2 and was recently diagnosed with MPS II. Amy is the mama who told me about CBT’s in the first place. Unfortunately, Amy and Owen left their CBT assessment at Duke yesterday, as it wold have been nice to be there at the same time as them. Owen’s website is: www.savesweetpea.com.
And last, but definately not least, are the Ibell’s: Marie, Simon, and Olivia. Simon is 29 and has MPSII. I don’t think we’d be where we are today if it wasn’t for them. They were the first MPSII family we met and they are unbelievable. I have trouble even describing what they’ve done for us. The first time our family talked to them was right after Trey’s diagnosis. We were lost and our world had collapsed. Marie and Simon got us back on our feet. They taught us how to hope, how to believe, and how to fight. Even now, when I’m down, I can call Marie and Simon and they’ll pick me back up. We’re actually going down to North Carolina with them, and can’t wait. For all of the above reasons, but also because Simon is as much of a fan of basketball as Ryan, and since UNC is Michael Jordan’s alma matter and basket ball is so big down there… Simon’s website is: www.bike4mps.org.
Since not many families go through a diagnosis like MPS, it is amazing what that one common bond can do to bring families together. We have met so many wonderful families whose children have been diagnosed with MPS (so many that I have not mentioned here). They just know what you’re feeling and what it’s like. Although everyone has different ways of learning to be with this kind of news, just knowing what it’s like to hear for the first time that your kid has something seriously wrong, or just knowing that this news doesn’t sink in and get accepted in a couple of monthes, that we still spend time crying and feeling like we don’t know what to do or how…they just get it.
But on the other hand, I think our families click because I think that even if our kids didn’t have MPS, we wold have been friends. Ellen and Andy are these comfortable, warm, and loving people who have dedicated their lives to their children and finding a cure for MPS. Amy is an incredibly strong, crunchy mama who is as “thoughtful” as me about what she feeds her kids, knows that Owen is destined for greatness, and and will do whatever it takes to help Owen. Amy found me on the Mothering forum. ‘Nuf said. Simon is caring and compassionate and just has this huge heart and Marie is a lawyer who doesn’t take any s@#t. They’re these amazing families who have gotten stronger as a result of this ‘diagnosis.’ And I am so glad I have them to lean on and learn from.
