"Los Tulipanes"

"Los Tulipanes"
48 X 48, oil on panel

Friday, January 18, 2013

The official Sotos Syndrome Support Association video is now available on youtube


Last July was a whirlwind of events for us.  Lucy was officially diagnosed with Sotos Syndrome and two weeks later she and I traveled to our first Sotos Syndrome Conference.  It was overwhelming and informative and such a wonderful opportunity to get to connect with so many people with similar experiences.  There is a broad range of differences, but always something in common with each person there.  

A couple of years ago, this video was made at a conference, and it has been a great resource to be able to share with with friends, family, medical professionals, teachers and therapists.  Sotos is so rare that the majority of people that we interact with are not familiar with the syndrome.  I am so grateful for the  families who shared their lives on this video, it has helped us.  I am also grateful to be able to share our journey with Sotos, here, on my blog.  I am so grateful for the people who find my blog searching for information about Sotos.  I am so grateful to be able to provide any support or answers to those who are searching.  I am pleased to be able to get to share this video, it is a great way to become familiar with Sotos Syndrome.  For those searching for answers or recently diagnosed, I hope you can find peace, belonging and support here. 


4 comments:

Septicgirl said...

Thanks for sharing, this is a very useful and heartwarming resource for those of us with sotos children. I will also share n my blog. Best wishes

smarty said...

Last July was a whirlwind of events for us. Lucy was officially diagnosed with Sotos Syndrome and two weeks later she and I traveled to our first Sotos Syndrome Conference. It was overwhelming and informative and such a wonderful opportunity to get to connect with so many people with similar experiences. There is a broad range of differences, but always something in common with each person there.
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Gexton said...

Beautiful! You show that less is more and that it is always best to suggest things rather than depict them with too much details. Very inspiring!

Thanks for sharing.
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eliz said...

It was the first thing I watched and learned about Sotos from! I found it on youtube! LOVED it! We are adopting a 5 yr old girl with Sotos. I am furiously learning, meeting others to learn everything to help her on this journey! Love your tulips! (((HUGS))) Elizabeth in MN
Maybe I'll see you at the conference?