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Batten Disease Support & Research Association - Midwest Chapter |
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Sharing Special Moments ...
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Chapter Meeting ~
Spring Time at the Children's Farm 2006 Palos Hill, IL
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February, 2005
Spring Time in Quincy.... Sandy, Sarah, and Amber Royalty, share a Disney movie with guest, Chris McDonough. |
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December 2004 Several Midwest Chapter members gathered at the GREAT WOLF LODGE at Wisconsin Dells. A GREAT TIME was had by all. |
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June 2004 We did it!
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Chris McDonough kisses Snow White at Disney Land duing his Graduation Trip.
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Mom's Corner ... and other thoughts......
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Darlene the Determined Daffodil Dedicated to Darlene Royalty By
Kelsey Busen (Darlene’s 11 year
“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 |
More Sharing Special Moments to follow......
Members ~ please send those special moments to share!
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