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Christopher’s Story

Christopher Lawrence Pena Jr.

Born 4/25/08 at 6:45pm

read journal entries oldest to newest for the full story- his birth story is pg47


 Christopher Pena Jr. 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 option we had to medically intervene, was a heart transplant. At that time, we opted against with only the very best quality of life in mind for him. We also didn't have guarantees he would survive if we attempted to transplant.
   Christopher was not given very long to live. Six months at the most. But we believed that the doctors could tell us what they knew from books, but our Mighty God is the Great Healer and could fully heal his heart either way. We placed him at the Lords feet and asked Him to give us strength for whatever was His will. We knew he would be okay, but we would need some help. At 45 days old, he was admitted into hospice care where he remained for 15 months. But Milestone after milestone passed.
   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. God still performs miracles each and every day! I thank God that He trusted me with this amazing testimony in which all praise, honor and glory goes to Him!

   In February 2010, it was discovered that Barth Syndrome (BTHS) 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 BTHS 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 BTHS 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. It was described to us like finding a needle in a haystack for the doctors to discover that he has BTHS!
   There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. Read more about Barth syndrome at

Christopher has most of the characteristics, including cardiomyopathy, neutropenia, muscle weakness and some other problems. He has homebound speech therapy 3 times a week and is currently doing very well, all things considering!
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.

You can read his full story by reading his birth story on page 26, then reading journal entries oldest to newest

"Life not matters because of the numbers of breaths you take, but the moments in which that take your breath away"-- author unknown

More sites featuring Christopher:

(News story from Dec 2011)-

(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)

Latest Journal Update

Happy *7th* birthday Christopher!

Hey yall! I have so much to update yall on from MRI's (which turned out ok AND he managed without sedation!), pilot for the day at Naval Air Station in Meridian and much more! I will do so as soon as things slow down :)
But I cannot let his birthday pass and not mention it!
ey y'all! I know it's a few days late but I just wanted to share Christopher's incredible birthday celebration with you all.
Reflections of Christopher's 7th birthday...
Our little boy. Our amazing boy who wasn't expected to survive his first six months of life. The one who spent his first 15 months as a hospice patient.
The little boy who is so happy, positive and full of life. The little boy who has so much to teach so many about life, from deep subjects of what truly matters in life to the facts of dinosaurs or geography. The one who never complains about his daily struggles and challenges. He's so amazing to us. It's incredible to look back and see how full of a life he's already had. I'm excited to see what the future holds for him.
He looks death in the face seemingly matter of factly and without fear. He knows things that no average 7 year old boy knows. He's far wiser than his few years. He was born with eyes that just told that he knew the secrets of life. He's had so much to teach us since.

We spent his birthday at an RV park camping in his camper Make A Wish gave him last year with several friends and family who also have campers.
Saturday was his party but that morning started out with every little boys idea of fun- mud!
The most amazing baker who the organization Icing Smiles (they pair bakers up with sick children and or their siblings with a local baker for a cake free of charge), the baker they paired us with, ran with the ball in a big way. With the collaboration of her and several other people, they really pulled off an extraordinary day for an extraordinary boy.
He had an too amazing for words triceratops cake, a chocolate cake, catered food including lots of cheese, fruit, sandwiches and pasta salad.
The Swinging Bridge RV park named him
"Manager for the day", professional sign with his name, golf cart and all.
They gave all of us who were in the party comped stays and gifted Christopher with several gifts including cane poles and lots of bait for fishing. The mayor of Byram came and presented him with a flag. The chief of police stopped by with the Byram
Police squad to enjoy the party, present him with a hat and badge, naming him
"Byram patrolman" for the day. They gave all the children rides in the police cars and let them handcuff and chase each other with the real handcuffs.
The Byram fire department came and passed out hats, badges, coloring books, crayons pens, mugs and more. They gave the children a ride in the fire truck sirens and all around the city. Christopher got to ride up front.
They brought a horse and gave the children rides around the park. Christopher was pretty exhausted at this point so he looked like he was going to fall off the horse had he not been in the arms of our cowboy friend. There was lots of fellowship with old and new friends alike and of course family. From out of and all over the state. It was great to spend time celebrating with those who have seen his journey and to share it with those new to his journey.
After, he went back to our campground where he had to go and rest.
Then a silly string fight, a cookout, watermelon and lots of other fresh produce compliments of his friends at wrights fruit stand (his favorite place to frequent) , and lots of children to play with until his body just couldn't keep Up with his desires any longer. He was asleep in no time. The next morning we packed up and came home yesterday where we are all still recharging our batteries. I'm exhausted from the events and excitement (in a good way) so I can imagine how Christopher must feel although he refuses to admit it.
I must say, his 7th birthday celebration was much better than I could have dreamed.
I cannot thank Iris, her family and friends enough for everything. As much of a blessing as all of this already was, it was compounded by the fact Christopher was so sick the week prior before we were touch and go whether or not to be forced to call his party off. Not having to deal with ANY of the preparations of this party was a blessing that I cannot ignore. IM SO HUMBLED BY ALL OF THIS.
Thank you God for another year with our boy, and thank you to all who celebrated with us near and far!
We have lots of pictures here at this link.