Wow! That's a lot of work for your precious little Angel! Was she tired when the video was taken? Dear little girl - she did get her head up a little, didn't she? She looks so sweet and knows she should be doing something, doesn't she? Hugs to all of you for your hard work. Love.....AL/UJ
Chloe was born April 20, 2007. At 5 weeks of life, she was diagnosed with an extremely rare genetic metabolic disorder called D-Bifunctional Protein Deficiency. It is one of several known Peroxisomal Disorders. Chloe is one of only two children in the United States with DBP.
Chloe was full term and born by C-section. She was 7 lb 13 oz and 20 1/4 inches.
At 14 hours of life, Chloe was taken to the NICU for monitoring. She had seizures, low muscle tone (hypotonia), an enlarged liver and high bilirubin.
After 10 days, Chloe was transferred to Texas Childrens Hospital where she remained in NICU until she was 4 weeks old. During this time, more problems developed and extensive testing was done; the doctors were puzzled by her condition.
At 5 weeks of life, Chloe was diagnosed with a Peroxisomal Disorder, later refined as D-Bifunctional Protein Deficiency.
There is neither a cure nor a protocol for proactive treatment of these disorders. Children live short lives and are beset with neurological and liver dysfunction, blindness, deafness, cognitive and physical developmental delays among other things. Chloe was given a prognosis of 12-14 months.
At the initiation of this blog, Chloe had just turned 22 months. She is developmentally delayed, but she is happy, engaging, growing and always making progress - slow but steady progress.
In October 2008, Chloe underwent an umbilical cord blood transplant (a stem cell transplant) with a donor cord in hopes that transplanting some cells that can do the jobs that hers cannot will help her lead a longer, better life. A transplant for DBP has never been attempted before. Chloe's doctors are cautiously optimistic that it will help her, but no one can say how or how much.
We are grateful to everyone at MD Anderson Childrens Cancer Hospital, Texas Children's Hospital, Baylor College of Medicine, The Team Approach, and all those who love, pray for, and support Chloe and her family.
Wow! That's a lot of work for your precious little Angel! Was she tired when the video was taken? Dear little girl - she did get her head up a little, didn't she? She looks so sweet and knows she should be doing something, doesn't she? Hugs to all of you for your hard work. Love.....AL/UJ
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