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February 6, 2023

Recognizing Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. This disorder has particular meaning to me because when I married my dear wife Beth, I gained not only a wonderful wife but also an equally incredible Down syndrome brother-in-law named Danny. Coincidentally, Danny had been a patient of mine in urgent care for a number of years before I met Beth. I always enjoyed seeing him back then as I had a special affection for those with this genetic disorder.

Years ago while in medical school I began a Sunday school class for the mentally handicapped, most of whom had Down syndrome. I came away from that experience with a deep appreciation for these kids, little knowing that someday I would have one as a brother.

Danny has taught me some valuable lessons in life. Most importantly he has shown to me what unconditional love is. I truly feel that he loves me not for what I can do for him but simply because I am his brother. I see in him a life free of the pressures and problems that affect so many of us. Granted we don’t live in a perfect world but I see through Danny’s life what it could be like if we were blessed to be free of judgment of others and to be truly humble. This is not to say that he lacks feelings. I most often see him with a big grin on his face, and rarely see him cry and get angry. He has a girlfriend, Jenni, who also has Down syndrome. They met as toddlers 40 years ago and their relationship endures.

Down syndrome is a genetic disorder with an abnormality of one of the chromosomes.  It is named after John L. Down, a British doctor, who was the first to describe the syndrome back in the 1860s. It occurs in about 1 in 700 births.

Most people with Down syndrome share similar traits:

  • Physical characteristics.
  • Delayed developmental milestones
  • Some degree of intellectual disability once called mental retardation, a term which I think should be avoided.

Risks for having a down syndrome baby are:

  • Advancing maternal age.
  • Having had one child with Down syndrome.
  • Being a genetic carrier (rare).

Some people still believe that a child with Down syndrome should be in special education schools or even institutionalized. This couldn’t be further from the truth. Most of those with Down syndrome live with their families or even independently. Some are able to be mainstreamed into regular schools through special education programs where they learn to read and write along with another curriculum. Some are able to hold down jobs. Due to modern medicine, those with Down syndrome are living much longer than just a few decades ago. Danny had his 50th birthday this year.

It is my sincere hope that everyone can appreciate that a person with Down syndrome is as much of a human being as anyone else and deserves our love and respect. Parents, please talk to your kids about this and educate them about Down syndrome. The next time you see someone with Down syndrome give them a hearty smile, and don’t be surprised if they shake your hand and give you a big hug.

Terry Hollenbeck, M.D., is a retired urgent-care physician at Palo Alto Medical Foundation Santa Cruz in Scotts Valley. Readers can view his previous columns on his website, valleydoctor.wordpress.com, or email him at [email protected]

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