Yesterday I had my first Littlest Heroes session with little Christopher. He is absolutely adorable with his sweet curls and big blue eyes.
Christopher Pena was born in April 2008 with non-compacted cardiomyopathy, which is a symptom of having Barth Syndrome. You would not be able to tell that he has a condition by looking at him. He is otherwise a very healthy looking child.
Brothers.
Given six months to live, Christopher celebrated his 2nd birthday in April.
The Pena family has put all of their hope and faith in God and gives Him all the glory for Christopher's miraculous life.
The Pena family is currently raising funds so that they can attend the 2010 Barth Syndrome International Scientific, Medical & Family Conference in Orlando, FL July 26. If you would like to donate, please click on the following link. http://www.wishuponahero.com/wishes/?id=554563
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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.
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. There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.
Given a life span of 6 months or less, Christopher celebrated his 2nd birthday this past April. The Pena family gives all glory to God for their little hero's miraculous life!
More articles about Christopher can be read on the following links:
http://www.caringbridge.org/visit/cj08/mystory
http://congenital-heart-defects.co.uk/ChristopherPenawithleftventricularnoncompactionCardiomyopathy.aspx
http://articles.complexchild.com/Feb2010/00187.html
To donate so Christopher's name can be on the Kenny Wallace CHD NASCAR:
http://www.change.org/chloe_duyck_memorial_fund/projects/fundraising/sponsor_christopher
5 comments:
thank you Jennifer for a wonderful job, these pics are so special to us and for giving me an opportunity to help spread more awareness about Christopher's condition! Thank you so much for your time!!!
I Love your pictures Kristi and an Amazing photographer! Thank God for Miracles!
The pics are beautiful! They brought tears to my eyes.
Mom of a barth child
Amazing little boy and family. Gorgeous photos. Powerful story. Thanks for your artistry and awareness!
A mother to a terrific boy who also has Barth syndrome in Iowa
These pictures are the most wonderful testimony to our loving God's grace and love. I am Christopher's grandmother and you have captured my family in the most graceful way. My son Chris, Sr. and daughter-in-law Kristi have been through so much since Christopher was born and to see these pictures brings tears to my eyes because the road has been long, hard and so wonderful all at the same time. I cannot express my appreciation enough for this wonderful gift. I am so proud of my two grandsons and I am sure people cannot understand why they are both so precious to me but if they see these pictures maybe then they will understand. My oldest grandson Justin deserves so much just because he is the BEST big brother ever. I am grateful to God that I am here to watch this miracle we call Christopher grow and give us so much love but I know we are also lucky and blessed because we were allowed to receive the most wonderful gift from God and for me that is Christopher and also Justin. Thank you again and may God bless you always. Paulette Pena
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