31 for 21: DAY 31 :: HAPPY HALLOWEEN!!!

"31 for 21" Mission Complete!

We hope everyone had a wonderful, safe and happy Halloween!

In lieu of a fact about Down syndrome, we decided to just end our "31 for 21" campaign with some Halloween cuteness!

Captain Jack Sparrow says ...

"YAAARRR!!!  Happy Halloween, everyone!"

31 for 21: DAY 30 :: Just the way you are

Believe it or not, people have said regarding Jack's Down syndrome, 

"But, he'll grow out of it, right?" or "But, there's a cure for Down's, right?"

I am not trying to dog anyone's intelligence or knowledge on the topic or anything, but I do want people to understand that Down syndrome is a genetic condition,
not a disease process.

Down Syndrome Fact of the Day #30:

There is no cure for Down syndrome.

Besides, even if there was a cure for Down syndrome, I am not certain I would take away Jack's diagnosis.

I would still do everything in my power to help him lead the happiest,
fullest, and most productive life possible,
but I would leave my Jack just the way he is.

He is the way God made him, and I (and hopefully you too) love him just the way he is,

and I wouldn't change him for the world.

Mommy loves you ... just the way you are!!!

While there is no cure for Down syndrome, research is making strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome.  Because of these advances, scientists now feel strongly that it may be possible to improve, correct, or prevent many of the problems with cognition that are associated with Down syndrome.

Individuals with Down syndrome have an extra copy of their 21st chromosome in every cell of their bodies. There is no way of changing that.

What CAN be changed about Down syndrome, however, is

the way people perceive, treat, and value individuals with Down syndrome.

How others view the diagnosis of Down syndrome, treat people with Down syndrome, and make fun and say things that hurt people like my son CAN be changed. 

My greatest hope in this world is for everyone to see Jack the way we see him. 

And, I hope that these last few weeks of reading this has helped you do so.

31 for 21: DAY 29 :: Future Fears

As you all know well by now, individuals with Down syndrome can face many physical and cognitive challenges throughout their lives.  During my "31 for 21" campaign to raise awareness, I have touched upon many of the difficulties that children with Ds are subject to, not in an effort to make you sad or feel sorry for us, but rather to open your eyes to the challenges people like Jack may potentially face.  In doing so, I hope to enlighten others about Ds so that they may in turn help individuals like Jack become more valued and included in our day to day society.

Medical concerns for people with Down syndrome do not stop during childhood.  There are also problems that adults with Ds may potentially face.  I tend to find it easier to focus on our life one day at a time, but it is difficult to put out of mind one particular problem our sweet little boy might face as he ages ..

Down Syndrome Fact of the Day #29:

One feature of Down syndrome is the development of Alzheimer-like plaques in the brain that generally manifests from about age 40 onward.  This process can potentially result in early Alzheimer-like dementia, memory problems, and gradual decline in cognitive and physical functioning of adults with Ds.

I had heard about this aspect of Down syndrome since Jack's birth, but what was new to me during my research was that this brain degeneration has been observed in the autopsies of virtually all person with Down syndrome of this age and older.  Moreover, I have learned that the National Alzheimer’s Research Plan, published in May 2012, underscores the relationship between Ds and Alzheimer’s disease and includes a focus on improving access to long-term services for younger victims of Alzheimer’s disease, including those with Down syndrome.

While this realization is certainly scary, it also opens my eyes to the efforts being made by professionals to unlock the mysteries still remaining about Ds and to help individuals like our son Jack live the longest and most fulfilling lives possible. 

And, knowing this gives me a glimmer of hope amidst all the darkness.

31 for 21: DAY 28 :: Sad, but true

Cancer is a topic that no one likes to discuss, but it is one that is close to my heart.  Many family members and close friends have been affected by cancer, with the most difficult being, of course, my father losing his battle with colon cancer in 2004 at the young age of 54.  Cancer scares the living daylights out of me because it is so prominent in my family history. 

Now it scares me even more for another reason ...

Down Syndrome Fact of the Day #28:

Children with Down syndrome have an increased risk of leukemia compared to children without Down syndrome, with the vast majority of the affected cases taking place within the first 5 years of life.

While children with Ds are more frequently affected by leukemia, they interestingly respond better and more rapidly to treatment than typical children do.  Moreover, solid tumors are really rare in people with Down syndrome (leukemia is a blood cancer).  Because of this, some researchers suggest that the extra 21st chromosome in Ds may actually hold many clues in cancer research!  Pretty amazing, huh?!?!

31 for 21: DAY 27 :: PARTAY Time!!!

Given that we celebrated both the Buddy Walk and Jack's littlest cousin Brooklyn's first birthday today, we are all pretty exhausted around here.  While I promise to have more energy and share more tomorrow, I will take the time to tell you that it was a WONDERFUL day full of celebration for a beautiful cause.  It was definitely the best turnout we have ever had at the Greensboro Buddy Walk, and we couldn't be prouder.

 

  We thank everyone from the bottom of our hearts for coming out to support Jack and others with Down syndrome in our community.  We also thank all the people who made the Buddy Walk possible again this year, including sponsors, vendors, volunteers, family and friends.  You could really feel the love today.  After three years of doing this, it may have been my most emotional Buddy Walk yet, simply because of all the people who made an effort to be there to celebrate our kids.  I just cannot explain my gratitude.  We appreciate all the support we have gotten over the past two and a half years since Jack has been born, and we look forward to many more years of watching Jack blossom together. 

 

We got to top off our day with a great 1st birthday party for my sweet niece Brooklyn and quality family time. 

What a wonderful day it was in so many ways.

 

After I am a little better rested, I promise to share some great photos from BOTH the Buddy Walk and sweet Brooklyn's party, but for now, I must be with my family ... and rest.  :)

 

I will, however, leave you with this ...

 

Down Syndrome Fact of the Day #27:

 

Kids with Down syndrome (and their amazing families) sure know how to have a GREAT time!!!  :))))

 

Also,
HAPPY 1st BIRTHDAY,

SWEET BROOKLYN!!!

We love you, and we're so glad we got to celebrate with you today in more ways than one!  We are one LUCKY family!!!

31 for 21: DAY 26 :: HandiCAPABLE

I have heard from more than one person that adults with Down syndrome have the minds and abilities of "a 12 year old". 

Well, this is NOT the case.

Down Syndrome Fact of the Day #26:

Children with Down syndrome do NOT “plateau”.

Each person with Down syndrome has his or her own talents and unique capabilities, and it is important recognize these and reinforce them.  Learning is a lifelong experience for people with Down syndrome, just like everyone.  Individuals with Down syndrome do in fact learn at a slower pace but nonetheless, continue to learn throughout their lifespan.

31 for 21: DAY 25 :: Painful Truth

Years ago when babies with Down syndrome were born, a common concern was life expectancy.  While it pains me to discuss this, because I could NEVER imagine my life without my sweet Jack in it, it is something that I have to think about. 
The truth hurts sometimes.

Thanks to advances in medical and clinical treatment and societal opportunities to thrive, individuals with Down syndrome are currently living much longer and fuller lives.  I can only hope that as Jack ages, there will continually be more and more advances being made to help him live an even longer and fuller life.

Down Syndrome Fact of the Day #25:

As many as 80 percent of adults with Down syndrome reach age 55-65, and many live longer.

Research on the topic of life expectancy in individuals with Ds is surprisingly a bit limited; but what I found was quite interesting.  A 1991 study looked at over 12,000 people with DS and found that major medical problems were not a consistent predictor of mortality, which was a common belief.  Instead, self-help skills were the best predictor of life expectancy.  Regardless of these findings, it would be foolish to predict how long a baby born now with DS would live as so many things can change for them medically and socially in the next decades.

While it is important to point out, I try not to dwell on the fact that my son's life expectancy is less than the average, due to obvious reasons.  What I choose to focus on instead is how to help Jack be the absolute BEST Jack he can be for his ENTIRE life...

... and give him LOADS OF LOVE along the way!