Welcome Friends!
Spencer N.
Kentucky
Birth Date -   March 18, 2010

Main Diagnosis - Say Barber Biesecker Young Simpson Ohdo Syndrome

Quilt Deadline: 7/1/2012

THEME: Sesame Street - favorite color Blue











































Biography

Prior to Spencer's birth, we only knew he had a clubbed foot.  We
were floored when he was one day old and our doctor told us he had to be rushed
to our local's Children's Hospital because he showed signs of a genetic
disorder.  He was diagnosed shortly after birth with Pierre Robin Sequence
including cleft palate, larygamalacia, tracheamalacia, broncheamalacia,
cranio-facial muscle weakness, and feeding difficulties.  In addition to his
PRS, he has contactors in his hands, left kneee, and foot, hypoxemia, central
and obstructive sleep apnea, VSD, PFO with a possible ASD, Blepharophimosis,
cryptorchidism, hypertonia, hypotonia, hypospadius, hearing impairment, sensory
integration disorder, and hypothyroidism. He spent the first three months of his
life in the hospital.
Spence has had 19 surgeries, hundreds of appointments and tests,  in his short
life.
He is the bravest and most determined little boy I know.  He has since been
diagnosed with Say Barber Biesecker Young Simpson Type of Ohdo Syndrome, to
which there are less than 100 diagnosed cases world-wide.  While Ohdo would seem
like a bleak outlook on the future, Spencer is thriving.  He has worked so hard
and his hard work is really paying off.  He is crawling like a champ and is
learning how to walk with a walker.
No words could tell you how amazing and special my little boy is.  He has faced
things, that no child should have to face, head on, without looking back.  In
spite of all the surgeries and poking and prodding, he is an amazing and happy
little boy. He has taught everyone around him about the joys of life.  He has
taught our family to love beyond limits and what really matters in life.    


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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...

LoveQuiltsUSA

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!



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