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Comment by dbarton(ship04div223) on July 15, 2012 at 8:41am

Good morning!  Time clock is down to 5 days!  I forgot to add that my SR said her division also earned their CNO flag!

Comment by diannep on July 15, 2012 at 8:16am

Good Morning all!

Comment by ellen0502 on July 15, 2012 at 5:26am

Guess I am the fourth here that knows about SMA, my cousin who live in Billings has it. He has come to Childrens Hospital here in Colorado for a couple of surgeries.

Janell: I see you live in Auburn, NE. That is the area my parents are from, my dad was born in Wabash and my grandparents lived Auburn before moving to Murdock. Small world!!

Comment by J-RockyMtn on July 14, 2012 at 11:17pm

The are working really hard - There ar some drug discovery programs beginning Phase I very soon. It's come a long way since we wer diagnosed.  They had barely discovered the the chromosome back then - now they can replicate it in mice and are making terrific discoveries.  SMA funded research is actually helping spinal cord issues and will bleed over into ALS.  Genitics is very complicated though and that's what makes it all so tragic.  Children lose their battle while we wait.  In all the fundraising we've done, my mind-set has always been -- we may not find a cure in time for my kids, but we will help someone in the futre from ever having to go through what we have.  We have to think that way to continue on ... we have to take our eyes off ourself. Plus --- we must have humor!  Got to laugh at life because it will beat you down if you don't.  I think that's why my son is enjoying bootcamp for the most part.  It's an adventure and he knows he will get through this.  His 1st letter home made us all cry.  He said it was challenging but what got him through it was his brother & sister.  "If they can live with SMA and be happy kids, then I have no reason to complain.  They are my inspiration"  He actually said that! I just cried right then and there.  Good kid .. great sailor he will be!  Sorry to ramble

Comment by J-RockyMtn on July 14, 2012 at 11:03pm

That is odd - definitly not as rare as the NIH says it is!  Hopefully they are in touch wih the Iowa chapter. My daughter chose Disney as well. MAW sure knows how to make it special.  Tell them that the FSMA conf. is in Disney Land next June!  We are going.  We just came back from the national conf in Minnesota.   We are use to 16 hour drives ... the trip we just took in June, PIR in Chicago, and Calif. next June will be another 16 hrs.  Thank you "book-on-CD" and portable movies in the van.

Comment by Janell on July 14, 2012 at 11:02pm

I still remember some of what I learned about SMA when my nephew was first diagnosed. I did a lot of research at that time to try to understand what it was and what his future held. It is truly a tragic disease. I was so afraid that he would be diagnosed as Type 1 and was so thankful when he was diagnosed as Type II.  I pray that someday they can find a cure for it!!!

Comment by Janell on July 14, 2012 at 10:46pm

Julie - Wow! What a weird coincidence that three of us here are familiar with SMA! My nephew is 4 years old and lives here in Auburn, Nebraska. He has type II also. He just got a trip to Disney World through the Make A Wish Foundation and had a BLAST, their whole family did!!! He was diagnosed around age one.

 

Comment by J-RockyMtn on July 14, 2012 at 10:40pm

What a small world.  Yes, Type I's are tragic.  We have so many families who have lost. My great Aunt actually had 2 children in the 1930's who died under 6 months. She was told Cystic Fibrosis - which somewhat mimics SMAI that young at least for what they knew in the 1930's.  After hearing her story recapping their symptoms - they were clearly SMA. She was 93 so telling her it was SMA would not have made a difference - so we did not.   It's all genetic so any relative could be a carrier, and if they hook up with another carrier, the SMA type varies.

Comment by Patrat-Ship04-Div223 on July 14, 2012 at 10:22pm

Julie - A very close friend of mine had two children with SMA, unfortunately she lost both of them way too soon. She is still very involved here in MA with SMA. I really hope that we get the chance to meet!

Comment by J-RockyMtn on July 14, 2012 at 9:28pm

Well hello JanellShip07 - Yes, our kids have Type II.  We started the Rocky Mtn Chapter for Families of SMA in 1997 - ran the chapter for 11 years and are still really involved holding an annual 5K.  Can't believe it's been 15 years of SMA.  Our kids are the lucky ones - physical challenges YES, but still with us.  We will definitley have to connnect.  Where does your nephew live and how old is he? 

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