18th Annual New England Walk-n-Roll

Wompatuck State Park

18th Annual New England Walk-n-Roll

First chess trophy!
First chess trophy!

Welcome to team Wizards of OZ 2018!

Team Wizards of OZ is back once again to support Cure SMA, and all the wonderful work they do for SMA families, and SMA research.  

Oskar has been pretty healthy this year, only one 5 day hospital stay in October due to a severe stomach bug.  We are learning that he  gets dehydrated pretty quickly if he starts vomiting, which is why when he got sick with the flu in February and started throwing up, we took him into the ER for fluids right away.  He got IV fluids overnight, along with Tamiflu, and he recovered from the flu remarkably fast.  

Oskar's scoliosis has gotten a bit worse over the last couple of years, and as a result he will need to have a spinal rod surgery this August.  It will be a big one with a long recovery period, but Oskar is a trooper, and he completely understands why he needs to have this done.  The upside is that after the surgery he will never have to wear a body brace again!  Can't say we will miss that brace, especially on hot summer days.  

Our boy continues to be an energetic and talkative child, who is curious about most things, loves to play basketball and Four Square on the school playground, serves as goalie during recess soccer, sings at recitals, and enjoys math, reading and science at school.  Actually, I think he enjoys pretty much everything at school!  He is also fighting for his independence more and more, wants to walk to school by himself (NOT ready), choose his own clothes, put gel in his hair, and claims that it's "embarrassing" that he doesn't have his own phone yet :)  Nice try Oskar.  I will give it to him that he is very convincing in explaining to us why he needs one, and while I can see an excellent debater in the making, there is NO WAY he is getting a phone any time soon.  

But the highlight of Oskar's year was no doubt the game of chess.  He started taking lessons last summer, and long story short chess took over his life.  He would probably play and watch chess all day long if we let him.  Dave and I played with him for a while, but in the fall he pretty much had surpassed us with his fancy openings and knack for tactics.  He started playing in tournaments in October, won a bronze and a gold, and is determined to work his way up to become a grandmaster.  We try to remind him that that may take at least a decade or more, but he is not deterred at all because he is so into the game, and is having such a good time at the tournaments.  Stay tuned!  

As usual we are supporting Cure SMA because spinal muscular atrophy is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. But there’s great reason for hope. Thanks to the dedication of our community and the ingenuity of our researchers, we now have the first-ever approved treatment that targets the underlying genetics of SMA.  But our work is not done. We know what we need to do to develop and deliver effective therapies. And we’re on the verge of further breakthroughs that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.

Cure SMA is  uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. They’ve already invested $70 million in research, and they also provide vital support for families living with SMA, improving their quality of life today.

Thank you again for your personal gift to support our efforts to fund vital research and family support programs for those affected by SMA.  Oskar continues to benefit directly from the support of donors like yourself, by participating in a clinical trial that was initially funded by Cure SMA.  Your support means the world to us!

Making a donation to Cure SMA is easy, secure and completely confidential.  Just click on the Donate Now button and follow the steps!

Thank you!

Íma, David, & Oskar

 

ps. Please consider walking with us on Satuday May 12th in Wompatuck State Park and join team Wizards of OZ.  It's an easy paved walk through a wooded area, which takes less than 30 minutes to finish.  

 

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