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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
www.Barthsyndrome.org

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)- 
http://www2.wjtv.com/news/2011/dec/09/batson-family-patient-81311-vi-112796/



http://www.onetruemedia.com/otm_site/view_shared?p=d2b6f739d18cb5d81686d6&skin_id=701&utm_source=otm&utm_medium=text_url


(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

hematology surprises

Today Christopher had a hematology appointment, Hematology visit brought some shocking information.... Something we've never dealt with before. We've always tried to keep him from his ANC bottoming out. Today his his ANC was the opposite of our expectations at 17,290!!
(that is high for a 'normal' person!!!)
No clinical signs of illness or infection, he's happy and active... Spleen is not enlarged The other numbers also indicate no infection but the WBC and ANC being elevated.... He had his shot last night so I expected a slight spike but the highest I've ever seen his numbers were around 8000... We've never seen such a drastic difference.
 We are going to skip the dose tomorrow and come back for counts on Monday when we go to cardiology follow up on the chest pains. (I also have a call into cardiology because although I don't think its likely there is a connection, I would like to keep them in the loop, especially since we are dealing with a syndrome. I would love to say that his neutropenia is resolved however it is congenital being that he has Barth syndrome so I do not know where this is going to take us. We may look at adjusting his already tiny dose. Prayers greatly appreciated for clarity!