Racing the Clock

Me visiting with a young attendee at the NDSC

Jerry and I, three staff, and two Down Home Ranch Board members attended the National Down Syndrome Congress Conference (NDSC) in Denver in mid-June.  Jerry and I went up early to attend the Global Down Syndrome Foundation Round Table on current advances in Down syndrome research and treatment.

Wow!  What a difference a few years make!  Down syndrome has traditionally been a subject few were willing to tackle in terms of research.  The reasons are complex and varied.

First, there's the matter of an entire chromosome being involved, not a single gene, as in cystic fibrosis.  It has only been in the last decade or so that researchers have been willing to tackle such a complicated and daunting task.  Where to begin?

Second, people with Down syndrome occupy a discounted niche in society, and many are perfectly satisfied for the main "treatment" for it to be early prenatal detection and elimination.  Why bother?

So, even though there are huge numbers of people with Down syndrome growing up or living with the effects of it, the amount of money set aside to study it and remedy it is minuscule in comparison.

But this is changing, and the reason it is changing gives me chills and thrills of happiness.  It's because--all over the country--families and friends of people with Down syndrome really, really love their kids and decided to do something to ensure a longer, better life for them.

Two attendees having their own dance

Of course we've always loved our kids, but we weren't always organized in ways to let us do anything about it.  We were marginalized and isolated and, until relatively recently, advised to stick them in a state school and forget about them.

When our Kelly was born in 1984, though, things had started to change.  Our pediatrician was knowledgeable and did not paint the grim picture presented to most new parents.  She was upbeat and told us right off, "You're going to have a great time with this kid!'

By happy chance, the NDSC convention that year was in San Antonio and my daughter Martha and I attended it when Kelly was just a few weeks old.  There were about 300 people total in attendance.  This year, believe me, we soaked up pretty much all the meeting and hotel space available in downtown Denver and the estimate of attendees is around 3,000.

Jerry with Michelle Whitten, founder of the Sie Center

At the Linda Crnik Institute for Down Syndrome Research at the University of Colorado Medical School, we heard presentations on proposed and ongoing research designed to mitigate or erase the effects of what is believed to be only a few genes on the extra 21st chromosome borne by people with Down syndrome.  We also heard the "good news" about families with a child with Down syndrome, which is that they tend to be happier than other families, with a lower divorce rate.  (Makes sense: all those daily hugs!)

At the conference itself we attended a variety of workshops, splitting up to be able to cover as much territory as possible.  Our group consensus is that each and every one attended was well presented and worthwhile, quite a testament to the organizers. 

Judy, Gigi, and Carol at banquet

Another exciting development to emerge from the conference is that the NDSC has embarked on an aggressive campaign to provide the medical community that will counsel prospective parents who have received a diagnosis of Down syndrome in their baby with accurate information.  Generally to date 90% of the information given is dismal and most of it isn't even up-to-date scientifically.

There is no way to even touch on all the important things we learned, but I encourage you to follow up with the links to websites included in this blog and below:

Down Syndrome Research and Treatment Foundation
Down Syndrome Research Lab, University of Texas at Austin
www.alz.org/research for research on Alzheimer's Disease
The Sie Center for Research http://www.globaldownsyndrome.org/our-story/anna-and-john-j-sie-center-for-down-syndrome/

Happy to be here

Volunteer Cacy Scott from Sunnybrook Christian Church of Stillwater, OK

I often correct people when they say Jerry and I "built" Down Home Ranch.  We're the Founders, but other people built it.

And I don't mean just the homes, the ponds, the greenhouses, the barns, and other structures.  I include the fences, the programs, and the organization.  They've done it every way from stacking chairs to digging postholes to trouble shooting technical glitches with our ever glitchy IT system.

Foundations gave us a lot of money to hire people to build these things, but volunteers enabled us to actually do it.  Over the past ten years alone we estimate that volunteers have contributed about 130,000 hours of love and labor.

Every now and then a closer relationship than usual develops with a group, as has been the case with Sunnybrook Christian Church of Stillwater, OK.  Rona Tracy, a church member blessed with a little one with Down syndrome, found the Ranch on the internet.  She got others interested and they decided to do a mission trip to the Ranch over spring break. We celebrated their fifth mission visit recently, and by now we all feel like family.

One special volunteer, though, has just a real special place in our hearts, and that's Cacy Scott, the lovely young girl pictured above kanoodling with Jenny (who loves to kanoodle!)

Cacy is 13, going into 8th grade at Pawnee Middle School in Pawnee this fall.  And she is a trouper.  She's here with her mom Rachel and siblings Wesley and Isabel helping out at Ranch Camp.

I first met Cacy when I walked into the Pavilion and was confronted with what seemed to be a face on the back of a head.  I quickly realized that the eyes, nose, and mouth were drawn there and that the two-faced little minx who talked a friend into the art work was quite a character.

At the age of two Cacy developed alopecia areata, a condition in which the body hair falls out, sometimes in patches, but often, as in Cacy's situation, completely.  Cacy's pate is egg-like in its smoothness, freckled and tanned by the summer sun.

I recently had my own bout with baldness and compared notes with Cacy on that matter.  Was she ever bullied at school?  Yes, but not because of being bald.  Did she get teased a lot?  Not really.  "All my friends are good with it," she says with a smile and a shrug.

I told her as long as I had on my wig over the course of my treatment, people told me I looked fabulous no matter how I was feeling, and so I had decided that people must judge other people's health largely on the basis of their hair.  She laughed. "Yeah," she said, "the hardest thing is people assume I have cancer and feel sorry for me.  One of the campers almost started crying."

Cacy loves the Ranch and comes whenever she gets a chance. She says she feels at home at the Ranch and with the Ranchers, because "They always remember me when I come back, and everything we did going back to the first time I came!"

Mom Rachel told me that Cacy is already lobbying to stay longer next summer.  I asked her what she'd done so far this summer and she said she was with the Blue Team for two weeks, assisting campers with activities and this week she's a floating CIT, which means she stacks a lot of chairs!

Cacy's plans definitely include going to college and studying to become a music therapist like her friend Robin Buford, who we agreed must be the world's most enthusiastic, charismatic, and entertaining music therapist.  (Needless to say she is a favorite with our Ranchers, too.)  After college will come marriage and a family, and travel in Italy.

But by now it was time to be off to blow up water balloons, help with line dancing, and stack some more chairs.