March 21 of every year is dedicated/known as World Down Syndrome Day.
The 21st day of the third month brings attention to the third genetic copy(trisomy) of the 21st chromosome.
World Down Syndrome Day for many is a day to recognize, through the beautiful faces of our children, an opportunity to educate.Down syndrome is a constellation of signs and symptoms, many times including similarities in physical features and overall development. Its presentation is extremely varied. Why?Why does one child thrive and live a much fuller life and another struggle more intellectually and physically?
-I was about to find out.When my fifth daughter was born I was initially joyful and happy. Three minutes later I found out she had Down syndrome. I was sad and very afraid. I didn’t know what the future held for her, or the rest of my family. Fortunately, I’m a research person at heart , and I’m also a spiritual ,devout Catholic. I prayed for my family and for myself. I then began my spiritual, research journey. Now I know why it’s written 364 times in the Bible that fear is the work of the devil… The more I learned, the less afraid I became -I was able to move away from mere survival and into loving and living life.
Fast forward 15 years >>> I have met the most most amazing children, and, just as my mother always told me,if you allow them, children can become your best teachers (including your own). i’ve met a whole host of these “teachers” and parents that reinforced my beliefs for my child., Parents, like me who had a change mindset versus one of managing what some would believe as a “bad outcome”. These parents with the change mindset had one thing in common – amazing kids that were doing remarkable things.Nutraceuticals and a few pharmaceuticals were some of the many building blocks we used to build our wall of success for our child. These nutraceuticals helped us recognize and capitalize on our daughter’s potential. If she had a thyroid condition we treated the thyroid. If she had cerebral folate insufficiency we gave her leucovorin.
These effective nutraceuticals and pharmaceuticals helped our daughter reach milestones- otherwise unreachable to her. However, these treatments are not always common knowledge. Turning the pages of the book when I quit reading to her at 12 weeks of life, using sign language at six months to let me know when she was hungry, speaking her first word at 10 months, reading under the age of two, were some of her many accomplishments. Some areas Margaret was ahead and other areas she was behind; but,t aren’t we all? Many individuals commented on Margaret’s incredible journey, but I think my parents put it best: “this child, she was born at the right time to the right family in the right set of circumstances”. We were blessed, and we knew it. We did not let fear or the low expectations of others interfere with our child’s development. If people couldn’t help us, we simply said thank you and moved on. The world of epi-genetics has found a way along with the trisomy 21 foundation to silence some of the negative effects of the extra chromosome. This has allowed us to capitalize on other pathways in her body, and move closer to closing the assumed unclosable gap.This child of ours with the extra chromosome,has given us “extra” love, and opportunities to live an extraordinary life.
Some of the mystery illnesses our other children had, we now had an understanding for their cause and it freed them from the bonds of their own disease processes. This little child of ours was a gift to our entire family, just as much as our other four children. That’s not to mean that everything is always easy. It’s not to mean that we haven’t had heartache, but everyone has heartache in different ways and everyone has joy in different ways. Reflecting back on her life and the growth of my own and our family, I know we are blessed. I now understand why other parents who have a child with Down syndrome are first to tell you how blessed you really are.
I understand why the adoption wait list for a child who has Down syndrome is the longest. Our lives have become more of an adventure and less frightening, and anything but dull.
There are highs and lows and life is far from boring .
This syndrome has been misunderstood, and feared far too long. 3-21, many of us celebrate. We celebrate the successes we call our children.
Children born with Down syndrome. we’re not celebrating the syndrome we’re celebrating the child- A child who wasn’t expected to thrive with the help of nutraceuticals and pharmaceuticals.
Many of us have chosen a path where we scientifically look at overexpression of genes and what can be done introducing the world of nutraceuticals and sometimes pharmaceuticals. I can’t wait to see what’s next for all of us on our adventure here on earth.