Cockayne Syndrome - Stacie and Luke Shattuck Foundation Inc.

Cockayne Syndrome - Stacie and Luke Shattuck Foundation Inc. At that time there were no other diagnosed cases of children living with CS. WHAT IS COCKAYNE SYNDROME?

My brother Luke, and I were diagnosed in 1991 at Children’s Hospital in Buffalo, New York, with a rare genetic disorder called Cockayne Syndrome (CS), a form of dwarfism. Cockayne Syndrome (CS), is an autosomal (affects both boys and girls)recessive disease (implies that inheriting two genes, one from each parent is required). CS type 1 or classic CS is the most common form in which the first year

of life is basically normal with the onset of symptoms in the second year of life. CS type 2 or early-onset CS, symptoms are displayed within the first year. A mild form of CS type 3 has been identified in which children have only a few characteristics. Cockayne Syndrome is also a leukodystrophy, which is a progressive disorder that affects the brain, and causes a loss of the myelin sheath that surrounds and protects nerve fibers.

I thought this was a perfect photo of Stacie's beautiful and contagious smile! :)
04/19/2012

I thought this was a perfect photo of Stacie's beautiful and contagious smile! :)

04/19/2012

I thought maybe I should post the following from Jamie:
I apologize if this post comes as a shock to some, as it has been hard to notify everyone that we are at the end of our time with Stacie. Our family would like to send thanks to everyone for the thoughts and prayers while we go through this trying time. While we've all known that the day will come that Stacie would leave us, it is still difficult to watch her go through her final days. We appreciate the support everyone has shown and will try to keep everyone posted on her progress, although at times it is difficult to put into words the feelings you have at times like these. Please continue to keep her in your prayers as we help to keep her comfortable in her final days.

12/30/2011

We are ready for 2011 to be done, and happy to start a new year!! Be safe and have fun! :)

12/25/2011

Stacie and Luke say Merry Christmas to everyone! :)

04/13/2011

The 1st planning meeting for Stacie and Luke's Poker Run will be May 1st at Molly
Brown's Cafe/Kitchen at 1:00 p.m. Let me know if you need added to the event invite list!

National Organization for Rare Disorders is another great resource!!
01/27/2011

National Organization for Rare Disorders is another great resource!!

National Organization for Rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, treatment and cure of rare diseases.

This site has a lot of information about CS and support for families.
01/27/2011

This site has a lot of information about CS and support for families.

Share and Care Network

01/27/2011
01/27/2011
01/27/2011

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2455 Triplett Boulevard
Akron, OH
44312

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