Addison Grace Palmer

 Addison's Story

Addison Grace Palmer was born February 11, 2009 into a great family her parents Kristie and Dan, and two brothers Nick and Ryan were happy to welcome her home.  This beautiful little girl seemed healthy but soon the family realized there was a problem.  Addison was born Craniosynostosis. 

	What is craniosynostosis?
	The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. As the infant grows and develops, the sutures close, forming a so sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance, lid piece of bone, called the skull.
	Craniosynostosis is a condition in which the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.   Surgery is typically the recommended treatment. The goal of treatment is to reduce the pressure in the head and correct the deformities of the face and skull bones. The optimal time to perform surgery is before the child is 1 year of age since the bones are still very soft and easy to work with. Surgery may be necessary at a much earlier age depending upon the severity of the condition.   Click on link below to watch information video
	Treatment of Sagittal Synostosis - Craniosynostosis Surgery Sep 25, 2008 - 00:56 This video animation describes the endoscopic management of sagittal craniosynostosis.

On May 1^st Dan and Kristie took Addison to Johns Hopkins Hospital in Baltimore to see a pediatric neurosurgeon, Dr. Edward Ohn.  Dr. Ahn was to perform surgery on Monday but had to postpone until Wednesday because Addison’s post opt blood test found that she also had a rare blood disorder, factor VII.

What is Factor VII?

 Factor VII was first recognized in 1951, and originally named serum prothrombin version accelerator (SPCA) deficiency.  Although the published incidence of Factor VII deficiency is estimated at 1 in 500,000, the disorder may be more common.  It is inherited in an autosomal recessive fashion, which means it affects men and women equally.  

The factor VII protein is part of the cascade of clotting factors that form the chain leading to a protective blood clot.  Factor VII deficiency is usually severe. In fact patients with less than 1% Factor VII activity experience similar symptoms to hemophilia.  People with severe factor VII are prone to joint bleeds.  In addition to spontaneous nosebleeds, people can experience bleeds in the stomach, intestines and urinary tract.  Head bleeds and muscle bleeds have also been reported. 

On May 5^th, Addison underwent a 3 ½ hour surgery.  After a stay in  I.C.U. she was released from the hospital on May 9^th but could not leave the City of Baltimore until the doctor gave the order that it was safe to travel.  The family welcomed Addison home on May 11^th.   

Pictures of Addison's head after surgery!

     Although Addison’s surgery went well her ordeal is far from over.  Addison will have to wear a special helmet.  So that means that as she grows she will need a new helmet every 4 weeks and with each new helmet it will have to be adjusted twice a week for the next two years.  Originally the family thought that they would have to travel weekly to Baltimore for the adjustments but (good news) they recently found out that the hemets and the adjustments can be done at Children’s Hospital in Pittsburgh.  Athough it is good news that they will not have to travel to Baltimore every week it still is a finacial drain on the family, having to miss work to take Addison to her appointments.

Pictures of me in my new helmet!

The emotional strain on the family has been great but now the financial need is growing and soon it will overtake everything the family has.  We are appealing to the community and anyone who stumbles on to this web-site for help.  We are planning a number of fundraising activities that will be posted on this web site and on www.thevalleyecho.com as soon as the dates can be posted.

If you are interested in making a donation to Addison’s cause you can make checks out to Addison Grace Palmer and send it to:

The Palmers