Batten Disease Support & Research Association - Midwest Chapter 


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  Sharing Special Moments ...
   Scroll Down to read "Darlene the Determined Daffodil" !

            Chapter Meeting ~

Spring Time at the Children's Farm 2006 

Palos Hill, IL

 

            February, 2005 

Spring Time in Quincy....

Sandy, Sarah, and Amber Royalty, share a Disney movie with guest, Chris McDonough.  

 

 

 

    December 2004

Several Midwest Chapter members gathered at the  GREAT WOLF LODGE at Wisconsin Dells.  A GREAT TIME was had by all. 

 

 

                    June 2004 

     

                   We did it!      

 

Chris McDonough kisses Snow White at Disney Land duing his Graduation Trip.            

 

 Mom's Corner ... and other thoughts......           

Darlene the Determined Daffodil

Dedicated to Darlene Royalty

By  Kelsey Busen (Darlene’s 11 year old niece)  

         “Hello, I’m Darlene.  I’m a daffodil.  I have twin girls, Dena and Denise.  I also have an older daughter named Darcy.   All three of them have BLOOMING DISEASE.  Blooming Disease is a disease that prevents daffodils from blooming.  The Gardener said that my daughters are going to die if they don’t open up after fourteen days.  I am determined to keep my girls alive longer than he said.”

            “I have a husband named Danny.  He helps me all the time.  Without his help, I probably wouldn’t be able to take as good of care for my girls.” 

            “I have a fulltime job (and I like to bowl), and Danny has a fulltime job, (and he also likes to golf), so we need a babysitter all of the time.  We have a baby sitter just for Darcy and one for both Dena and Denise.  My nieces are a big help!  They come over to help out a lot, too.”

            “A day or so ago, the Gardener came over to tell Danny and I that Darcy was going to die in the next couple days if she doesn’t open.”

            “Darcy has opened!!!  Last night, while we all were sleeping, she just opened!!!  We had a special lunch today.”

            “A couple days after that, the Gardener came back over to say that Dena and Denise might die in the next few days.  I hope they both open.”

            “Well, guess what happened?  Dena and Denise have opened!!!  We all had a big special supper.”

            “So now all of our daughters are open!!!  No more worrying.  We are all one big, open, happy family!!!!!!!”

                          

TOGETHER WE CAN COPE...
(Dedicated to Christopher McDonough)

The minute you were born, that cold and snowy night,
I knew that you were meant for something special in this life.
You appeared to be an Angel, sent from far above.
A PERFECT little Blessing sent here just for ME to Love.
Your hands were folded gracefully, as if to say a prayer.
How could anyone imagine all the lives you'd touch and share?!

You grew into a little gent, as handsome as could be.
Your brilliance and your Love of Life amazed us constantly!
Your big, Angelic eyes reflected Love to all you met.
Little did we know your purpose had not surfaced yet.

Your eyesight started failing you, when you were merely seven.
We searched and searched for answers, but then we turned to Heaven.
When we were told the news was worse, I asked for signs of HOPE.
I then received an answer - that TOGETHER WE CAN COPE.

The Doctors all repeated the terrible, sad news.
They said that they were sorry, but afraid that we would lose.
This Mission, although GREAT, is one that we perceive,
through Love and Faith, and with God's grace is one we could achieve.

We'll fight this Fatal Batten Beast with vigor and with grace.
We'll laugh at Joy, yet shed our tears as we endure this race.
We MUST accept this mission, as the purpose of our life,
as we struggle thru the challenges, the sadness, and the strife.

But, REMEMBER what GOD told me.....
That TOGETHER WE CAN COPE.
So, hang on my courageous one....
For I know that THERE IS HOPE!


LOVE, MOM                                                June, 2000
   

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