Welcome Friends!
Christopher P.
(Cousin of Jacob)
Mississippi
Biography

Christopher Pena was born in April 2008 with non-compacted cardiomyopathy.
Non-compacted cardiomyopathy is a very rare condition in which the heart muscle
remains sponge-like after birth, which causes the heart to be very weak.
Christopher's cardiomyopathy affects his right and left ventricles where it is
very hard for his heart to pump and function correctly. They said the only fix
was a heart transplant. At that time, we opted against.

Christopher was not given very long to live. Six months at most When he was 45
days old, he was admitted into hospice care where he remained for 15 months.
Christopher was released from hospice when an echo cardiogram showed that his
heart function had tripled! And at 18 months, his heart function was almost
normal.

In February 2010, it was discovered that Barth Syndrome is the cause of
Christopher's cardiomyopathy.
Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that
affects males. Typically, boys with Barth syndrome present with hypotonia (low
muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite,
and/or slow weight gain) at or within the first few months after birth. Other
important features of Barth syndrome include bacterial infections because of
neutropenia (a reduction in the number of white blood cells called neutrophils),
muscle weakness, fatigue, and short stature. Although most children with Barth
syndrome manifest all of these characteristics, some have only one or two of
these abnormalities and, as a result, often are given incorrect diagnoses. It is
very rare, less than 200 known cases worldwide. So much that if people would
hold hands from one end of the world, all of the way  around, only one of those
people would be a boy with Barth syndrome.
There is no specific treatment for Barth syndrome, but each of the individual
problems can be successfully controlled.


With this diagnosis is affirmation to never lose sight of the trust we must have
in our Father in heaven. We still depend on miracles every day. God is in
control, and He doesn't do half miracles and our trust in Him has never failed
us.


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...

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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Birth Date -   November 14, 2008

Main Diagnosis - Dialated left ventricular non compaction cardiomyopathy

THEME: Cherished Teddies for boys quilt