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April 2012


Dearest Beloved Friends,

 

I have already sent this newsletter in the mail last week but we know there may be some who prefer it either just via email or hard copy or both. If you want only via email please write to me to let me know.  If you receive our email notes but are not sure you are in our database with your home address please just let  me know and I will add you.  We love you all... Proud Parents, Family Members and Professionals who care for our children.

 

You can write to me at [email protected]. If you need me, my cell is 602-622-6344.

 

Love you all,

Gina Johnson (aka David's Mom)

 

From my heart to yours2

 

Dearest Beloved Friends,

 

Do you want to know the sweetest thing that my son David has done for me? He gave me you! It is because of him that Sharing exists today. He has helped me know what the medical professionals couldn't know; it's all about "The UP side of DOWN syndrome!" How I love my son! 

 

Just a few days ago I received the most tender-hearted letter from a brokenhearted mommy-to-be. There were a million things I wanted to tell her, but most of all I wanted to say, "Congratulations" ...and to tell her the truth that my beloved friend Kris Holladay taught me years ago. 

 

This picture was taken the day Kris shared this wisdom with me. She'd invited me to a gathering of mothers, whom she lovingly referred to as "The Handicapped Mom's Club." It was hard for me. All of the children were like her beloved daughter Kari (age 5) who has Trisomy 18. Back in those days (1984), children like Kari were described as "profoundly mentally and physically retarded." (and yes, I still HATE that word). Sweet Kari had to be fed with a G-tube that had been surgically inserted into her stomach. 

 

I watched as Kris ground up Kari's seizer and heart medication, mixed it with her formula and then poured it into the large glass syringe she'd attached to the end of the tubing. Gravity did the rest. Just as that milk went into Kari's tummy, she smiled the biggest smile and seeing that delighted Kris. Immediately, Kris gushed, "I know, Kari! Isn't that delicious!?" She continued, "You know what I wish, Kari? I wish I had a feeding tube too and if I did, I'd grind up tacos and chocolate milkshakes!" 

 

Her playful words took me off guard and before I could stop myself, I heard my words betraying my wounded heart. "Kris, don't you think this is hard?" Kris looked stung from my thoughtless words, but she said nothing. She unhooked Kari's tube from her syringe, wrapped it back up into a figure 8 and re-taped it to the skin just beneath Kari's undershirt. 

 

Then, Kris looked at me and in her eyes I saw compassion, love,

and an understanding I did not yet possess when she smiled at Kari and replied, "Gina, I would not wish this for my worst enemy, but I would hope it for my best friend." Those words echo in my heart for this lucky new mom today.

 

All my love,

 

Gina Johnson

(aka David's mom)

Sharing The Spotlight

  All About Emersen Stevenson

 

 

It is sometimes difficult to put into words what Emersen means to me and my family. This sweet girl has brought more joy, laughter, and hope into our home thank we could have ever wished for! If someone is sad, Eme is there with her arms open for a hug. If someone is frustrated, Eme is waiting to make them laugh! She is only two now and we look forward every day to the ways she will think to strengthen others in the future.

 

Emersen also allows us to view others in a different light. We know that regardless of Down syndrome, Eme is an amazing individual with a unique and special personality. What a blessing and lesson to our family it has been to learn these things! 

 

 

We feel so blessed and humbled that Emersen was sent to our family! There is rarely a day that goes by that someone in our home does not say "isn't she awesome?"  She inspires me and my family to be more compassionate, to respect and love the differences around us, and most importantly to educate others. 

 

 

 

If only everyone could have the opportunity tofeel the joy that comes from raising a child with Down Syndrome... this would be an amazing world to live in!

 

    With love,                                                             

  Eme's Mom (aka Lani Stevenson)                

   [email protected]                          

 

Upcoming Events...

  

Dr. Don McClellan M.D.

Pediatric Endocrinologist- Eastside Chapter  

APRIL 26, 2012

 

When: Thu, April 26, 7pm - 9pm

Where: Mesa Student Service Building 

1025 N. Country Club Drive 

Mesa, AZ 85201

Description: You won't want to miss hearing from 

this remarkable and caring doctor! Dr. McClellan is Chief of Endocrinology at Phoenix Children's Hospital and will share information about how to keep our children healthy. Many children with Down syndrome can have some type of thyroid imbalance and/or other endocrinology issues so here is your chance to have all of your questions answered. Please come! Free childcare is available. 

RSVP: [email protected]

 

 

 

Glow 2SHAE HOMES GLOW RUN 10K/5K and 

1 mile Walk/Run FUNDRAISER!

 

When: Saturday, April 28, 6:30pm - 10:30pm

Where: Encanterra Country Club, 

36460 N. Encanterra Dr. 

Queen Creek, AZ 85140 

Description: This unique event will be held at 

the exclusive golf course and luminaries will light the course as it winds around its 18 spectacular golf holes through rolling hills and under a bright, starry sky. If you are a runner, or know someone who loves to run, please invite them to come and support our organization, Sharing Down Syndrome Arizona. 

Registration: For more information and to register for this fun event, 

go to www.RacePlaceEvents.com.

(All proceeds will be donated to benefit "Sharing.")

 

 

Ryan Celmer

PLAY GROUP-EASTSIDE:    

 

Two dear moms Chaunacy Armstrong and Sarah Celmer said they would be glad to host our Eastside playgroups. They meet for play dates every Wednesdays at Summit Park at 9:30 a.m. (Recker & 202 area) 

 

Molly and Anthony Armstrong
 
As it gets hotter, they may have to consider other places to meet.  All are welcome. Please call or text them to let them know you are coming, so they can be looking for you!  

 

Contact: Chaunacy Armstrong 480-577-7010            or Sarah Celmer 480-251-1915

 

 

 

 

Down Syndrome Medical Conference

Saturday May 12, 2012 

Rachel Hanzuk, Proud Grandma of Colten, Lynda and Robert Cristel

Who: All parents and caregivers for children with Down syndrome.

What: 4th Annual Down Syndrome Medical Conference. 

 

Lindsay & Journey Stephens and Proud Grandpa

Please join us to learn from top-notch medical professionals how you and your child can benefit from the information you gain at this conference. Past topics that have been covered; feeding, sensory, development, nutrition, orthopedics, cardiology, endocrinology and surgical concerns and how to be the best advocate from medical care. There is also a question and answer period after each session.

 

When: 7:30am - 1:30pm

Where: Phoenix Children's Hospital 

Melvin L. Cohen Conference 

Center, 1920 East Cambridge Avenue 

Phoenix, AZ 85006

Register: Click here

 

Sorry, no childcare for this event.  

 

 

  

 

TASH CONFERENCE 

Arizona Wins (AZWins)  

June 13 & 14, 2012

 

8th Annual Summer Institute on Inclusive Practices. 

Kim Malchow and Isaiah Saksek
 

TASH believes (as we do) that all children, regardless of the severity of their disability, deserve to be educated with their peers who do not have disabilities. 

 

Early Bird Registration from now until May 20th. 

Register: click here

 

For information contact:

Sherry Mulholland: 

[email protected](520) 603-4010 

Andrea O'Brien:

[email protected],  (602) 717-8106

 

Sharing has three scholarships to give out for this training on a first come, first served basis. Contact us at 480-926-6500

 

 

SHARING DOWN SYNDROME ARIZONA'S 

WALK FOR DOWN SYNDROME

Saturday, September 22, 2012

 

Who: YOU! ...or anyone who loves someone with Down syndrome or
anyone who wants to make a difference in the lives of people who have 
Down syndrome
.

Where: Tempe Diablo Stadium 

2200 W. Alameda Dr. 

Tempe, AZ 85282

Why: Because yohaven't partied until you've partied with us and our 

great kids! This is our biggest annual fundraiser and all donations are used to help us continue to support families lucky enough to have a child with Down syndrome. All donations are tax deductible. 

Agenda

7:30 am - Registration and light Continental Breakfast

9:00 am - Award Ceremony and Walk Begins

9:45 to 11:30 am - More family fun than you can imagine with 

carnival style game booths, moon bounces, obstacle course bounces, rock-wall climbing, DJ Ron's music and dancing. Enjoy yummy treats; ice cream, Jamba Juice, snow cones, cotton candy. Great exhibitors tool. (Sorry, only Service Animals allowed)

11:30 am - Event Ends

 

Register your team online at www.sharingds.org

 

 

JULY: off for vacation

 

  

 

Eastside Chapter Back to School Summer Swim Party

August 2012

  

More details TBA at www.sharingds.org

 

  

Eastside Chapter Parent Informational Meeting 

October 25, 2012  

  

Guest speaker and Topic: TBA 

When: 7:00- 9:00 pm 

Where: Mesa Student Services Center 

1025 N. Country Club, Mesa AZ (Just south of Brown Road) 

Childcare provided 

Check event page of website www.sharingds.org

  

  

WESTSIDE October Meeting TBA

 

 

Eastside Chapter Parent Information Meeting 

November 15, 2012 

 

Guest speaker and Topic: TBA 

When: 7:00- 9:00 pm 

Where: Mesa Student Services Center 

1025 N. Country Club, Mesa AZ (Just south of Brown Road) 

Childcare provided 

Check event page of website www.sharingds.org 

 

 

WESTSIDE November Meeting TBA

 

 

East Chapter 

Breakfast with Santa Holiday Party (and his favorite Elf!)

Saturday, December 1, 2012 

 

Lianne, Ethan, and Andy Fletcher
Where: Rockin' R Ranch 

6136 E. Baseline Road

Mesa, AZ 85206

When: 9:00-11:00 am 

Continental Breakfast, dancing and music with DJ Ron, Continental Breakfast, Crafts and much more holiday fun! Bring your cameras and come to party with the cutest kids ever!!

 

 

 

West Chapter 

Breakfast with Santa Holiday Party (and his favorite Elf!) 

December 2012   

 

DATE AND LOCATION: TBA

 

 

2012 Easter Parties

 

A special thanks to all who came to our East Valley and West Valley Easter Egg Hunt. 

 

To download pictures from our Egg Hunts, please click here.

 

 

  

 
IF YOU MISSED THE AMAZING MEETING...

 

 

With attorney Kent Phelps, establish a Special Needs Trust for only $250. His specialty is Estate Planning

 

Kent Phelps holding Journey Stephens
Contact Kent at:

 

BETHEA GILLETTE JOHNSON & PHELPS

3850 E. Baseline Road, Suite 125

Mesa, AZ 85206

(480) 467-9000

Cell: (480) 686-1238

Email: [email protected]

 

************

  

With Amy Dill (Parent Information Network Services PINS) about Transitioning into Preschool and Beyond. (She is AMAZING!)

 

Contact Amy at:

(602) 542-7460

 

************  

 

About DOWN SYNDROME RESEARCH with Dr. Ben Seltzer and Dr. Javier Cardenas (St. Joseph's Hospital and Barrows Neurological Institute)

 

They are seeking people 18-30 who have DS to take part in this research.   

Contact Catherine Young at:

(602) 406-3719

 [email protected]  

  

  

World Down Syndrome Day

 

Thank you to Reliable Refrigeration (owner Dean Wurtz) who invited KNIX Country 102.5 to make this party happen! 

 

We LOVE dear "Vanny's Granny" who said we just had to Celebrate Down syndrome Day and that we did! KNIX's Barrel Boy made it so much fun and all participants had all the free ice cream they could eat! 

 All donations were given to benefit SDSA. A special thanks to all who came and had fun with us! Contact Reliable Refrigeration for all your business refrigeration and ice cream soft cone machine needs! They are truly wonderful and reliable! 



 

 

 

 

 

Reliable Refrigeration

913 E. Juanita Ave, Suite 1

Mesa, AZ 85204

(480) 899-5424

www.arizonafreeze.com 

 

  

 

 

 

 

 

This Newsletter is Sponsored By:

 

Johnny Larsen Family Dentistry

726 N. Greenfield Rd, Suite 126 

Gilbert, AZ 85234

www.johnsonlarsendental.com

[email protected]

For an appointment call: 

(480) 813- 8890

 

 

If your company would like to advertise your good works by sponsoring our newsletter, please email Gina Johnson or call her at 602-622-6344.  

Sharing Down

Syndrome Arizona  

 

745 N. Gilbert Rd.

Suite 124 
Gilbert, Arizona 85234

 

(480)926-6500

 

[email protected]

 

www.sharingds.org


Mission

To educate and empower, but especially to give hope to individuals who have Down syndrome (and their families who love them) so these children may grow up to become independent self-advocates. We promote positive acceptance, understanding, and inclusion is embraced by all as we celebrate each life. 

 

Quick Links







Like me on Facebook
 
Resources for Parents

 

 

Parent Information Network (PINS) 

 

More info: Here

 

***

 

AZ Wins with Inclusive Schools 
  
Monthly programs for parents who have children in public schools. 

More info: 
AZWINS.org

***
 

SEEK Arizona


Specializing in the Education of Exceptional Kids

 
***

Special Olympics- Arizona

 

Athletes inspired to greatness.


  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
  




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 

"They err who think Santa Claus comes down through the chimney; he really enters through the heart." 

~ Mrs. Paul M. Eli