parents

Watch her belly grow.

This video was made by Ryan Marshall and it documents his wife’s pregnancy.  I have watched it about 500 times- I think you will too

Ryan blogs at Pacing the Panic Room and has created a kids record inspired by his step-son’s love of music, who was diagnosed with Smith Magenis Syndrome in late 2009.    You can buy the music here – you’ll love it.  Ryan explains the motive behind the music.

“Upon first learning of this diagnosis there was virtually no information easily available to inform the family of what was to be expected or how to manage SMS.  After his wife received a phone call at her work by the developmental pediatrician who ordered the test, the short clinical explanation delivered over the phone offered no comfort, or much useful information. It was apparent the Doctor was reading a descriptor out of a book, and just said that she should take her son to see a Geneticist for more info. Cole Marshall turned to the internet and found the website PRISMS (Parents and Researchers Interested In Smith-Magenis Syndrome) which provided the first real glimpse into the complexities and challenges ahead.

100% of the proceeds from the sale of Do Fun Stuff will go into a grant fund established by PRISMS and the money made available to grad students who select Smith Magenis Syndrome as their field of choice. This is in the hopes of generating more intense case studies to provide parents, and researchers with new and important information about the mysteries of Smith Magenis Syndrome.”

Thanks Lynette