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Alzheimer's Disease, the Silent Threat to My Son's Future With Down Syndrome

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Indulging in pizza with our family on a Friday night was pretty ordinary. Sharing with our then 20, 18, 15 and 10 year-olds that in six months they would have a new baby to welcome home — not so ordinary.

That very special night was full of excitement, disbelief, and joy for the gift of new life. Weeks later we came to learn our gift of a little boy also had Down syndrome. As a family, we spent many months trying to do our best to understand what it meant and wrap our heads around something we knew so little about. What we did not know for a few more years was the early- adult cognitive decline that can be associated with Down syndrome. Knowing this did not sit well with us.

Intellectual disability is one of many issues facing people with Down syndrome. 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 it is Alzheimer’s disease. Many people 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. This is a hope I have for my child with Down syndrome.

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 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 $80 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 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 seem to be 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.

Like many parents, I have pursued paths I believed to be the best to 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 there are 400,000 individuals in the United States and 6 million worldwide with Down syndrome who I believe deserve to dream of a future filled with more possibilities. 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 who completes our family. Then, we might be able to sit comfortably with “what will be, will be.”

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Originally published: March 31, 2017
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