10 Reasons to Support the DS Program in the NSTAR Walk - #8

#8  Knowledge is Power

"Back in the day" not a whole heck of a lot was known about Down syndrome.  Children who were born with Ds were often institutionalized, and for those who chose to raise their children, it was an uphill battle for everything from education to medical care.  Today, the opportunities for our kids are endless.  Research on things such as medical issues that commonly affect people with Ds, educational best practices, and strategies for encouraging proper development have opened doors for our children that weren't even visible in the past. 

Boston Children's Hospital has played a hand in this research as well.  Currently, they are conducting three exciting research projects.  The first is a Sleep Apnea Study.  Individuals with Down Syndrome are at a high risk of obstructive sleep apnea, which can cause a wide range of medical and developmental problems if not treated.  To diagnose sleep apnea, all children with Down syndrome are referred for a sleep study, where they are monitored through wires and video while they sleep in the hospital overnight.  The thing about sleep studies though...well, they suck, for lack of a better word!  Children are expected to sleep with 15+ wires glued to their heads, while trying not to get tangled in them...and are expected to complete regular sleep cycles!  Needless to say, parent chaperones don't get a whole lot of sleep either!  So this Sleep Apnea Study is going to try to make these required tests more comfortable and convienent for everyone involved.  Just a reminder of Ty's sleep study last August...



Could you sleep naturally like this?!  Poor kid!



The next exciting research project is called the National Down Syndrome Registry, which Boston is now participating in.  Participants of the clinic can volunteer to join the registry, where medical data of individuals with Down syndrome across the country will be tracked in one place.  Why is this important?  Well, people with Down syndrome tend to have common medical issues...heart defects, sleep apnea, hypothyroidism, hearing loss, etc.  By establishing this registry, common medical conditions affecting our kids can be tracked much more closely, trends can be identified, and interventions can be implemented.  Years ago (not too many years ago), the life expectency of a person with Down syndrome was 30 years old.  Knowing what we know today about these medical conditions, the life expectancy has jumped to 60+ years, and will continue to rise as more is learned.  This registry is a huge step in Down syndrome research.

The thing about research...it comes at a price!  Funding is essential to continued learning about these crucial issues affecting our kids.  A portion of money raised for the Down Syndrome Program is used for this ongoing research, that will undoubtedly touch our kids' lives in profound ways.  The more we know, the more power we have to build bright futures. 

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm