Hope and Unlimited Possibilities

I am constantly amazed when I hear about people fighting for causes that are near and dear to their hearts.  There are so many people out there taking action to make this a better, more hopeful, more loving world.  I am continually inspired by their courage and tenacity.  Most of these people are just ordinary people – moms, dads, kids, friends, everyday people trying to be the best they can be.   They are ordinary people doing extraordinary things.  They are following God’s call to change the world. 

The other day I was blessed to hear Margie Doyle speak about her mission.  (The beautiful picture above is of Margie and her son Colin.) My heart and soul were moved by her hopeful spirit and her determination to make a difference in the research and treatment of Down Syndrome.  I have asked her if I could post her words here on the blog and she has agreed.  I am honored to share her story with you.  

March 21, 2012 our nation will host the first World Down Syndrome Day at the United Nations. In light of this celebration it seemed the appropriate time to share my mission…. with the underlying hope that others join in…..

While sitting in Mass on Jan 24^th, 2011 I listened to our Pastor address the congregation regarding the 38^th anniversary of Roe vs Wade……. As troubling as it is to face such truths in life…. as abortion…….. for me on that day I experienced even more heartache and restlessness than in the past………….. My son Colin was in my lap. Colin is my youngest child and was born with Down syndrome……..

We are currently at a crucial juncture for babies with Down syndrome. Since the ability for prenatal diagnosis of this chromosomal anomaly…….92 % of all fetuses with Down syndrome are aborted….As of this month, two California based corporations , Sequenom Inc and Verinata Health intend to offer a new blood test that will reveal the anomaly accurately as early as 8 weeks gestation…. This avenue ….is of course gaining momentum through media and funding……and the likely result will be a further increase in the termination of a fetus with a diagnosis of Down syndrome…… Can you fathom a number higher than 92%…..I certainly can’t……

I wrote to our pastor that day to explain how I was personally troubled by these astounding numbers that I shared with him ….and he indicated his shock and disbelief as well and regarded these statistics I provided as “silent scandals”…………… I told him I needed to find a way to have some impact in this area………… but given the daily demands I was currently under …with a child having special needs and still a baby…. I had no idea what that involvement might be, but that I would remain in touch……

Six months later I saw a path ………and it was very clear…..I certainly don’t know exactly what goes through a person’s mind ….or soul ….at the time when they determine abortion is the solution…but I believe FEAR is THE prominent emotion when it comes to learning your fetus has Down syndrome….Fear of the unknown, and fear from information that is dated and no longer relevant….Fear ….from how many …..in society viewed an individual with Down syndrome a mere 40 yrs ago….

We are all aware of the stance the Catholic Church takes on abortion….I am asking that you, as Mother’s, help me in this effort to change this statistic and ….help me to replace fear ………….with hope…..

Down Syndrome Research and Treatment Foundation (www.dsrtf.org) was founded in 2004 based on the belief that all people with Down syndrome deserve the opportunity to experience their full potential in life, and we fund the research to make this a reality.

— We were founded by parents tired of hearing DS is too complex or too late to treat 

–       the development of treatments to address cognition and prevent the early onset of Alzheimer’s disease which is prevalent in Down syndrome became a possibility with the decoding of the human genome in 2003…..and today there are clinical trials now underway !!

About 400,000 people in theUnited States have Down syndrome, and yet it is significantly underfunded by the government……….. The NIH only provides  $50/person annually…………. that’s as much as 95% less than funding for similar disabilities.

In part because few researchers focused in this area, therefore….few qualified proposals even made it to the National Institutes of Health requesting government funds.

However, today the tools and technology are now available………. and Down syndrome research has RAPIDLY PROGRESSED…. from being too complex and too difficult, to being an interesting and rewarding field of study

Leading researcher of cognitive dysfunction in Down syndrome, Johns Hopkins Professor Roger Reeves remarks, “I never thought….. I would be in a position to say….. we are going to take therapies forward to directly treat Down syndrome……. Now…. I believe this to be the case…… We really are in the early stages of a revolution….. in understanding the basis for many of the features that occur in Down syndrome.”

It can be difficult to find the time, the strength…. and sometimes… courage, to make the “ask” for support……but it pales in comparison to the obstacles our children and loved ones face and push through every day of their life……….. Every morning Colin walks out the door…. with many obstacles my four other children have never encountered… and likely never will in their lifetime….he does so with courage, energy and perseverance…He stands 38 inches tall…..and I am empowered by his fortitude…

 Just Imagine the outcome… when fear is not the dominant emotion……….. but what reigns more powerfully……… in the hearts of those upon learning their unborn child has Down syndrome ….is hope….. and unlimited possibilities’ in their child’s future.

Please support our effort at Down Syndrome Research and Treatment foundation………… and change fear into hope….

Where there is hope …………… there is LIFE….

                                         

Please visit the website for DSRTF (Down Syndrome Research and Treatment Foundation) at http://www.dsrtf.org/  for more information and please continue to pray for a future filled with hope and unlimited possibilities for all of God’s children.