Please help us!!

Dear friends:

Many of you that we have had our fair share of hard times (medically) in the last 4 years. Carson and Cooper (and recently Keegan) struggling with Sagittal and Metopic Craniosynostosis:

(The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart. Metopic The metopic suture begins at the nose and continues superiorly to meet the sagittal suture. Metopic craniosynostosis results in a narrow, triangular forehead with pinching of the temples laterally. Treatment involves releasing the suture and expanding and rounding out the upper face, forehead and skull)

and Carson, Keegan, and Riley with Chiari Malformation:

(This malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of CSF between the spinal canal and the intracranial space. This form of Chiari malformation may be associated with syringomyelia/hydromyelia. It is diagnosed more commonly in adolescents or adults.)

All in all, we have been through 13 surgeries in the last 4 years. That is way to many for anyone to have to go through.

As many of you may not know, there is NO CURE for either condition. I know for a fact, that there is slim to no fed money going towards Chiari research. As for Craniosynostosis (premature fusion of the skull bones), It is up to each and every cranio family to help spread awareness!!

To do this, I need YOUR help! My dear friend, Amy, President of cappskids.org, is trying to get an awareness walk planned for the fall of 2010 in NY. To do so, we need 100 people to raise at least $100.00 each! Just to get the walk off the ground.

Please, we are in the season for giving right now. If you could donate at least $1.00, that would get us closer to having our walk for Craniosynostosis Awareness

To donate, please click the LINK in the upper left hand corner of my side bar that say Craniosynostosis Donations HERE

Our family, and so many of our Cranio friends, THANK YOU from the bottom of our hearts!

*If you donate, please leave me a comment, you don't have to mention the amount, just your name.

Many of you may not also know, but I am the sponsor coordinator for CAPPSKIDS. I help match families going through surgery with families that have already been through surgery with a child. It's sort of a mentoring program.

1 comment:

Lisa said...

Just wanted to let you know I made a donation for you guys! I think you are an amazing woman!!