THE BLOG
01/21/2015 05:02 pm ET Updated Dec 06, 2017

Shouldering a Child's Dream

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Indulging in pizza with your family on a Friday night is pretty ordinary, going on to share with your then-20-year-old from college, and his siblings of 18, 15 and 10 years that in six months they would have a new baby to welcome home... not so ordinary.

Excitement, disbelief, and joy for the gift of new life filled the evening that very special night. Weeks later we would come to realize our gift of a little boy also happened to include Down syndrome. As a family we spent many months trying to do our best to understand what that meant and wrap our heads around something we knew so little about. What we did not come to know for a few more years was it also included the likely cognitive decline in our son, and brother's, early adult life. This early decline did not sit well with us.

Cognitive impairment is one of many issues that can hinder a child with Down syndrome and yet as daunting and difficult as this can be to navigate through at times, it is merely one aspect.

There is another force coming full speed ahead straight at our son's future, and the four siblings that adore him, and it is Alzheimer's disease. Almost every person with Down syndrome will develop the brain pathological changes of Alzheimer's disease, but at a much earlier age.

Cognitive impairment in Down syndrome was once thought impossible to treat and too late to address. That is no longer the case. The purpose of cognition-funded research is to allow for those with Down syndrome to participate more successfully in school and to prevent the early onset of Alzheimer's disease. I think it is safe to say that this is a hope of most, if not every parent, of a child with Down syndrome.

Now, the science that once offered no answers has made breakthroughs and tremendous progress in a greater understanding of Down syndrome. Unprecedented human clinical trials are currently underway across the nation testing compounds to enhance cognitive function and researchers are racing against the clock to prevent the early onset of Alzheimer's disease.

There is nothing I would like more than to allow myself the luxury to sit back and enjoy the soft beautiful imagery of the dream of my child reaching his fullest potential in life, whatever that may be. Unfortunately I awake daily from this dream as it comes to an abrupt, sobering halt because reality rears its ugly head..

• Only a mere $65 per person annually is allocated by the NIH for Down syndrome research and there are over 400,000 Americans with Down syndrome alone. This research is grossly underfunded.

• We are forced to rely heavily on private funding at this time and with the lack of awareness for this research, both in the general public and Down syndrome community, we are leaving science on the table.

• In order to attain and secure the researchers there must be the funds available to see their efforts through to completion. Otherwise, their precious time, passion and life commitment is for naught, and there are other projects for them to pursue, but not for us.

How often does a parent sit and ponder the concept, "If only..." Well, here we sit with the opportunity to finish this statement, to rewrite the ending for the possibilities that can lie ahead for our loved ones.

Like most parents, I have pursued paths believed to be those that best ensure the brightest and healthiest future possible for my child. For me, this path included raising awareness as a volunteer for the LuMind Foundation. LuMind Foundation's mission aligns with my deepest desire and dreams for my child's future because these dreams do not include unnecessary limitations or Alzheimer's disease.

I now know there is science out there that could make a difference in the life of my son both as he grows and develops into a young man, and in his adulthood. It is truly empowering, and hopeful, to realize our efforts today can make a difference in our children's tomorrows.

There are few guarantees in many aspects of life, or science. But I can guarantee this: there are 400,000 individuals in the United States and 6 million worldwide with Down syndrome who deserve to dream of a future filled with more possibilities, not unnecessary limits or the degeneration of Alzheimer's disease. This dream for my son's future sits squarely on my family's shoulders and warrants our action to ensure that every avenue and every possibility is exhausted, for a little boy that completes our family, before we ever sit comfortably with "what will be, will be."