Dear Marguerite, I spoke with you the other day
about working on a Power Point Presentation project for school. I
would like to know if I could please receive a copy of some pictures
of your family, you and Joe, Jordon and of the recent Golf
Tournament so that I could add them to my presentation. It is about
two thirds complete and all I need are the pictures to add plus some
final touches. If these pictures could be copied to a disk it would
make it very easy for me to add them to the presentation. Thanks for
your attention to this matter. Oh! and have I ever thanked you for
the opportunity to do this internship. It is definitely helping me
to get back into the swing of things since it had been so long since
I have worked in an office. Well I am ever so grateful! It has been
a lot of fun too! Thanks again. Lynnette Kateley.
From
Trever Beattie
Dear Crespillo Family
You are doing a great job in creating awareness of this terrible
disease. Jordan looked like a cool little dude. And I'm sure he's
keeping the Big Guy busy catching fly balls! My 8 year old son
Andrew was diagnosed with ALD on January 3rd of this year.
Unfortunately with the onset of the disease there was no treatment
for our little Hero. He's palliative at the present time and we're
keeping as comfy as possible. Like Jordon, Andrew had a lot of
the same loves. There are no other more courageous and as tough, as
our little men, and all of the children of the Leukodystrophys.
Would it be possible to use Jordon's website as a link from Andrews?
These Boys have stories that have to be heard! Keep up the great
efforts of raising awareness. Take care and the best to your family.
I hope Jon is doing well. With Hope Trever Beattie
From Diane Zmrzel
Dear Jordon, Although we never met, I feel like I know you well.
Your parents have told me how special you are. My son, Wyatt, also
has ALD. You two have many other things in common too. Like you, he
lives in Lincoln where he loves to fish and catch snakes and frogs.
He even goes to the same school where you went. Your mom was the one
who figured out Wyatt had ALD, giving us time to appreciate and love
him as well as keep him healthy. Please thank God for sending her to
us. I hope he will also send your parents and family the strength to
get through another year without you. I’m working hard to find a
cure, but even when I think I’m making progress, I never forget
about you. Love Diane Zmrzel.
From
Donna Martin
I JUST ATTENDED A FUNERAL TODAY OF DERECK
WASHINGTON JR AGE 13, THAT HAS PASSED ON FROM ALD. I HAVE NEVER IN
MY LIFE FELT SO HELPLESS. I HOPE A CURE IS FOUND SOON.
From Marguerite Crespillo
Happy Birthday Baby! You would be 13 today and
just starting teenagerhood:) I wonder every day what you would
be like now! I am sure you would have your same silly grin and
contagious laugh! You would probably be taller than me now and so
handsome. I miss you so much and just want to give you a big hug and
a kiss! We are working hard on finding a cure so hopefully no one
else will go through this horrible disease especially your brother
Jon. We love you and miss you! Happy Birthday Baby!
