Welcome Friends!
Baylee W.
Kentucky
Birth Date - September 26, 2007
Main Diagnosis - NK Cell Deficiency
THEME: Girl Figures
Biography
In aug 2011 right before her 4th birthday baylee was diagnosed with a very rare disorder called ISOLATED NK CELL DEFICIENCY.there is very few cases in the world...she also has Ehlers-Danlos syndrome .
Patients with NK cell deficiency are born with low or nonexistent levels of NK cells. As a result, these patients are vulnerable to infections. Life expectancy varies among patients, depending on how severe the deficiency. The condition may lead to fatal infections and recent studies have suggested patients may have an increased of developing cancer.
The exact incidence of NK cell deficiency remains unknown.Currently, there is no specific treatment for NK cell deficiency. Instead, treatment focuses on curing infections associated with the disorder. .....Natural killer (NK) cell deficiency is an inherited immune system disorder in which the patient has low or absent levels of a certain type of white blood cells called NK cells. The NK cells help the immune system fight against disease and infection. These cells recognize and destroy body cells that have become infected with viruses or cancer
Joint hypermobility is the major manifestation of this form of Ehlers-Danlos syndrome. Any joint can be affected, and dislocations are frequent. This type is also inherited as an autosomal dominant genetic trait.
Sept 26 2007 I give birth to baylee she was 8lbs 12 1/2oz..She did very well just a little trouble breathing at first..baylee cried alot! She could not sleep laying down. She had to sleep sitting up in a swing. She would throw up almost her whole bottle at every feeding.at 3 weeks i think. She started getting really sick with high fevers. She was put in the hospital and we found out she had a very bad bladder infection. The docs said that was very rare for a baby at this age to have this..as time went on the 1st year was a bad one .lots of hospital stays high fevers,viruses flu. you name it. She prob had it..We started going to see many docs just trying to find out what was going on.but no one could tells us anything. When she was just old enough to show us
that things hurt she would always cry with her legs hurting.back to the docs only to tell us it was growing pains.which i know down deep it wasn't. We had mri, cat scans ,bone scans. was told it was prob a bone tumour,leukemia and so on,but after test after test still nothing..still having leg pain staying very sick all the time now she has stated getting big sore all in her mouth keeping them for weeks then they would go away and come right back after a week or so.she couldn't eat or sleep with these.then we was sent to Vanderbilt in Tenn after 3 years we got our bad news is not good she said..nk cell deficiency i was like what is that? That was like well its not good. We don't know alot about it but what we do know kids that we have saw don't live long so we transferred to Cincinnati children's hospital where we meet dr blessings..he done test after test after test.we still are doing test trying to find out more. He said he has not saw but a few people with wht she has
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Click Here to go back to the 2013 page!
