JACKSON, Miss. – Batson Children’s Hospital is proud to announce Christopher Peña Jr. has been named this year's Children's Miracle Network Hospitals® Mississippi Champion. Christopher will serve throughout 2012 as an ambassador for Batson hospital and all sick and injured children in the state of Mississippi.
Each year, the Children’s Miracle Network Hospitals® Champions program identifies a child with a remarkable medical story from each state. The Champions and their families will travel to Orlando, Fla. and Washington, D.C. in September to highlight the vital work taking place at children’s hospitals.
Children’s Miracle Network Hospitals raises funds for 170 children’s hospitals across North America, including Batson Children’s Hospital. Delta Air Lines has been a proud supporter of Children’s Miracle Network Hospitals since 1998, and this year is supporting the 2012 Champions program as title sponsor. Ace Hardware and Chico’s FAS are official sponsors of the 2012 Champions.
Christopher's official debut occurred last week during a special event at the Mississippi Children’s Museum. Family, friends and Batson hospital employees were on hand to congratulate Christopher and wish him well as he and his family prepare for an exciting year.
Christopher was diagnosed at Batson Children’s Hospital in February 2010 with a rare genetic condition called Barth syndrome. He was the first child in Mississippi diagnosed with this condition. At this time, there are fewer than 200 known cases of Barth syndrome worldwide.
Barth syndrome is a rare 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. Christopher has experienced these problems since birth and now doctors know why. Other complications 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.
There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. Like an average 3 year old, Christopher has a lot of energy. But he does get tired more easily than others his age. Because of this, he sleeps longer than most at night. Chris and Kristi, Christopher’s parents, “let him set the pace.”
Please contact Amanda Alliston at 601-984-1976 or aalliston@umc.edu to arrange for an interview with Christopher Peña Jr. and his family.