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February 2012

From my heart to yours2


"I know God will not give me more than I can bear.

I just wish he didn't trust me so much."

~ Mother Theresa





Dearest Beloved Friends,


As you know, I love quotes that make me smile but when I read this one I knew just the picture I had to put with it...




"Go forward in life with a twinkle in your eye and a smile

on your face, but with great purpose in heart."
~ Gordon B.  Hinckley



Eme and her sissy
Eme and her proud big sister Adysen.


Now if these sweet daughters of of dear Lani Leonard who is our Chapter Leader in Flagstaff, don't have a "twinkle" in their eyes, I don't know who does! Their smiles remind me that I want to tell you about a wonderful gift I was given but first I want to make sure you know about our wonderful upcoming events...

Valentines Day Heart 


Flagstaff Chapter Monthly Parent Meeting

Valentine's Day Celebration

Pink girl 


Thursday, February 16, 2012  

6:00 pm -8:00 pm


Come out and celebrate Valentine's Day and friendship with us! There will be crafts for the kids and socializing for the adults, and treats for all to enjoy! Hope to see you all for a night of fun and don't forget to speak the word!


St. Pius X Center (Catholic Church)

2257 E. Cedar Ave

 Flagstaff, AZ 86004



Respite Provided (Must RSVP)




 Hurry Quote


Westside Chapter Monthly Meeting



Presented by Parent Information Network Services (PINS) Specialist

Jill Castle


Thursday, February 16th, 2012 

6-8 pm


Respite Provided (MUST RSVP)





It is always a little frightening as our children start transitioning to a new phase of their lives; preschool, high school, and beyond.  You will love hearing from dear Jill Castle who is with the Parent Information Network Services (PINS) who will join us to discuss what transitions will take place with our beautiful children when these changes come to their lives.  You won't want to miss this meeting. Make sure you RSVP to reserve your space for respite care.






 David 2012 wall


East Valley Chapter Monthly Parent Meeting



Dr. Javier CardenasDr. Seltzer 

 Featuring Special Guest Speakers


Javier Cárdenas, MD

Director, B.R.A.I.N.S. Clinic,

Barrow Neurological Institute

and St. Joseph's Hospital and Medical Center



Benjamin Seltzer M.D.


Program Director 

St. Joseph's Hospital and Barrow Neurological Institute

 to present:


Information and Invitation to Participate in a Research Study for Individuals with Down Syndrome, who are ages 18-30.


The Research Study is in Regards to Cognitive Development 

& Medications to Benefit Individuals with Down Syndrome


Thursday, February 23, 2012

7:00 pm - 9:00 pm


Mesa Student Services Building

1025 N. Country Club, Mesa, AZ 

(South of Brown Road)




Free childcare provided (must RSVP)



Bryce Dean
Adorable Bryce Dean

Dr. Seltzer and Dr. Cardenas are two dear doctors whom I truly respect.  They will present information on the latest Down syndrome research and they will give us information on how to participate in the research if we would like to. I know this is a meeting you won't want to miss. 

Over the years there has been much controversy among parents regarding various treatments that claim to enhance the cognitive development for children with Down syndrome. 


For me it began 28 years ago when David was just 4-months old. There were many parents who encouraged Curt and me to use what was then the popular drug therapy for our son.  We were told if we gave these injections to our son, he would improve in his cognitive development. I was still a new parent who was struggling with the label that had been given to my son of "mentally retarded" (The words of that day). It broke my heart every time I thought of what his life might be like because of him having Down syndrome.  I was anxious to do anything I could that might help him.  

David as a newborn
David as a newborn


So Curt and I decided to make the long drive from Tootle, Utah, to California, with our five little ones (ages 4 months to 7 years) so we could hear the lecture that was being presented by the doctor from Germany who had invented this drug therapy.


I remember sitting in the room with many other parents and I literally hung on to every single word the doctor spoke.  As he described the effects of what this drug could do for my son, it sounded like a miracle drug and I was so amazed. I could tell this doctor was sincere and heart-felt and I wanted to believe this could be what my son needed.


But although his words were impressive and the parent's testimonials made me want to help my son, the more I learned, the more uncomfortable I became.  The doctor explained that the serum parents were injecting into their children was made from the "fetal brain cells of sheep."  That bothered me.  I also learned that the FDA did not approve this therapy and that made me even more uncomfortable.


I learned that because the drug was illegal in the U.S. if parents wanted to obtain the drug they would have to go out of the country or have it shipped to them. Either way I saw more red flags warning me to be careful.


My husband Curt is a dentist and he has a more clinical and scientific way of looking at things, but I tend to go by the feelings in my heart.  Yet even with all of this, I so wanted to believe there was something I could do to help my baby. And the testimonials sounded so convincing. My heart struggled, trying to know if this would be right for my son.


At the end of the lecture, came a time for questions and answers, so I raised my hand and asked, "Have you ever lost a child, due to this therapy?"  The room became silent as if everyone wanted to hear the answer to that question.


The Doctor looked at me and calmly said, "Just one."   He then went on to tell how great he felt this therapy was as it benefited children with Down syndrome. I do not know what the other parents there that day did, but I knew I had my answer. I knew in my heart of hearts "just one" was "one too many" for me.


That was in August of 1984 and in the 28 years since that time, I have seen many popular "therapies" come and go. Some were vitamin therapies, while others therapies urged parents to give their children the drug, Peracitim to aide with memory. (Peracitim was a drug used in Germany to treat patients with Alzheimer's and Dementia, but not one used in the U.S. for that purpose.)


The one thing these therapies all had in common was they all claimed that if used, they would enhance cognitive development of children with Down syndrome. The second thing they had in common was they had not been tested or approved of by the FDA (Federal Drug Administration).


Now I tell you all of this because I truly am excited to have these two dear doctors come to share with us. I believe this current research is exactly what needs to be done. That way, if they are able to create a drug that will enhance the learning capacity of our children we will know that the research was scientifically monitored in a controlled environment, using a double blind study. 


It will also have been done where the safety of the participants who had Down syndrome was of the utmost importance.  Then, if and when they do come up with such a drug, parents will know it is safe for their children to use.


Again, Dr. Seltzer and Dr. Cárdenas are two physicians for whom I have the highest respect and I know they will answer any questions you may have regarding what outcomes they are seeking. Again they are specifically looking for individual's ages 18-30 who have Down syndrome to be considered to be participate in this research program.  So come to the meeting to learn more about this research program, both about what they have discovered so far and how to participate if you would like to.




Some have asked me if there were a drug invented that could help, would I use it for my son. I am not sure, but I am willing to learn. However, you know me and how I feel about my son, David.  Some of the greatest experiences of my life have come to me because  I am "David's Mom."  There have been moments that have made me laugh and others that have made me cry but through it all, David truly has been "The Wind Beneath my Wings." Part of his charm and what I love BEST about him is because he has this wonderful disability of Down syndrome. 


Who could have thought that it would be one tiny little extra 21st chromosome that would be the reason I have completely fallen head over heels in love with my son?  David is truly my finest teacher. But I know that as we learn more we will know in our heads and in our hearts what is right for our children.


Well, anyway...I have rambled on for long enough, but before I close I did want to tell you about the sweetest gift I have ever received. At Christmas my children gave me a book I call, "Then and Now."


What they didn't know was that December had been an especially depressing month for me. I was missing my mom and my beloved mother-in-law. I hated getting old, knowing I was turning 60 in January. It was obvious to me how it seemed Old Father Time and Mother Nature were ganging up on me bringing changes to my body I neither wanted nor liked.

Sugar Mama (my mother-in-law) and David
Sugar Mama (my mother-in-law) and David


Gina's mom
My mom and me.

I loved that I had inherited some good things from my late mother including her faith in God and in the power of prayer. She also gave me my enthusiasm and love for life and all people. She is the one who taught me to serve. But I also inherited some things I was not as crazy about, namely my double chin and those pesky chin hairs that seem to spout up where you least want them.


Then to add insult to injury a while ago I was sitting with a sweet little girl on my lap. She was one of my five-year old Sunday School students and we were in the Singing Time portion of our Sunday School.  She and I were singing to our heart's content when she would glance back and me and smiled. It did my heart good. 


But then she looked at me and kind of did a double take. I saw her stare at my chin and I was embarrassed feeling certain that she had spotted on of those pesky chin hairs that I had forgotten to shave. (Embarrassing I know, but true.)   


She then looked at me with her beautiful green eyes and in a sad tone of voice she asked... "Mrs. Johnson... Can I ask you a question?"  I replied, "Of course you can honey."  Then, in an even sadder tone she said, "Mrs. Johnson...are you turning into a Grandpa?"  Well, after all, we were at church and I knew I had to tell her the truth so I replied, "Why yes, Hailee, I am!"



As if that was not bad enough then some weeks later I ran into a sweet boy who was now about 9, but whom I had also taught when he was five-years old.  He was cute and gave me a big hug and was chatting with me. But then he stood as if he was staring at my head. I felt that old uncomfortable feeling, wondering if he too had spotted one of those rogue chin hairs.


But his comment to me was different. But he too sounded confused when he innocently stated, "Mrs. Johnson...when you were my teacher, your hair was brown!" (Thanks Brandon!) 


Brandon V



I share this with you because there is something you should know. That one day you too will grow old like me. You will feel young in your heart but others will see the age. It might make you sad but then one day per perhaps then your children will give you a gift like my children gave me to me.  It is a book I call, "Then and Now." It will remind you that the gift of Time is the most precious gift of all and you will be thankful for each day of your journey.


Happy Valentine's Day and know you are loved!



With all my love,                      

"David's Mom"

      (aka Gina Johnson)



Time is a gift, given to you, given to give you the time you need,

 the time you need to have the time of your life. " 
Norton Juster


The Johnson Family

"Then and Now"



 CJ & David 2CJ & David1

















Sleeping 1Sleeping 2 














dryer 1Dryer 2 














dirt 1Dirty face 2 















Cowboycowboy 2 

















sleeping 2




"Life is just like an old time rail journey...delays, sidetracks, smoke, dust, cinders, and jolts interspersed only occasionally by beautiful

vistas and thrilling bursts of speed. The trick is to thank

the Lord for letting you have the ride."

~ Gordon B. Hinckley


 Spotlight on Sharing Families 


                                    Jonathan Parker Bradshaw                                                                            

 Parker Baby


     Hi, my name is Parker Bradshaw!  My parents are Mark and Kay Bradshaw.  I was born September 14, 1997 in Mesa, Arizona.  I have eight brothers and sisters.   I'm the youngest, so I get a lot of attention.  I am 14 years old now and I have a wonderful life!!! 




     I started my school years at Entz Elementary, where I attended preschool and kindergarten.  My kindergarten teacher was Miss Riske.  She was great!  She treated me just exactly like the other kids (well, maybe a little better) and expected me to do what the other kids were doing.  I might have been a little slower, but sure enough, I learned the routine and learned to count and read and play on the slides and swings and sing and play games and I got along very well with the other kids.  They didn't notice anything different about me---only that I was funny and a little bit shorter than they were. 


      parker and girlfriend

     For the remainder of my elementary school years, I attended Johnson Elementary.  From the time I started first grade, right up until now, I have been surrounded by good friends and wonderful teachers who care about me.  At the beginning of each school year, my teachers were a little 'anxious' about having me in their class because they didn't know how it would work out. 


 Parker fishing


     Well, it worked out very well.  Usually by the second week of school, my teacher would call my parents and say how thankful they were that I was in their class.  They always said what a 'nice' class they had, and they thought it was partly because I was there and it made the others kids act nicer. 


     I was included in the general education classrooms with just a little outside help for math and reading.  I can read well, my mom says I have beautiful cursive handwriting, I'm a good speller, I struggle a little with math but thank goodness for calculators, and I play the cello in my school orchestra.  I began playing the cello in 4th grade.  I practice almost every day and I'm keeping up pretty well with the other kids in orchestra.  I LOVE to perform and practice, and I look forward to continuing in the orchestra at Mesa High School next year.

 Parker playing cello


     Some of my other favorite activities are swimming, running, playing with my 8 nieces and nephews, watching movies, playing board games, and having friends over.  I am active in my church and scouts, I participate in Special Olympics swimming and track, and I always try my best in school. 


 Parker and friends


     My mom has this to say about me:   "Parker loves everyone!  He gives compliments freely, loves unconditionally, says and does funny things to keep us all happy, and loves life!!  He makes a difference in our family by keeping us focused on what is important in life.  Parker is loved by all who meet him and we are so proud of him.  We are LUCKY to have him in our family!"



 Green Tongue parker


 Parker and Kay


Kent Phelps 2012
Gina Johnson Kent Phelps, Journey Stephens, and Rachel Hanzuk



If you missed our great meeting (January 26, 2012) on Special Needs Trusts and Wills feel free to contact my dear friend Kent Phelps and he will be glad to answer any questions you may have.  Kent is the attorney we used for our Estate Planning and Special Needs Trust. Tell him "SHARING" referred you and he will only charge you $250 for your Special Needs Trust. To view the DVD of that night just call our office & they'll mail you a copy (480-926-6500) His contact information is Kent Phelps, (Bethea, Gillette, Johnson and Phelps Attorneys at Law) Office: 480-467-7000. Or feel free to call his cell at 480-686-1238. 

Johnson Family 2012 





starbucks logo 


COFFEE FOR A CAUSE at Starbucks!


Thank you dear Starbucks for choosing Sharing Down Syndrome Arizona as your charity for donations!


What a wonderful night it was and thank you dear friends and family for your amazing donations!


(Starbucks 2012 W. Guadalupe Rd. Mesa, AZ 85202(corner of Dobson and Guadalupe)


coffee 1  

coffee 5Coffee 4 coffee 6coffee 3
Quick Links

Resources for Parents


Parent Information Network (PINS) February Newsletter: 

Click Here



AZ Wins with Inclusive Schools 



Monthly programs for parents who have children in public schools.  More info:

SEEK Arizona

Specializing in the Education of Exceptional Kids 

Special Olympics- Arizona


Athletes inspired to greatness.