Chloe was admitted to the hospital in January 2011, after she was found to have dilated cardiomyopathy at about 8 weeks old. After her heart function did not improve, she received a heart transplant at the end of February and was discharged March 11, 2011. Her recovery from her surgery has been ideal, but she has had problems gaining weight and has little muscle tone. Her team of doctors looked into the possibility of her having a muscle or genetic disorder, which may have been the reason for her original heart failure, but it was just confirmed at the end of August that she does not have muscular dystrophy, glycogen storage, DNA, nerve, mitochondrial, or myotonic disease. Chloe has a disorder known as congenital fiber-type disproportion. This is the least common type of myopathy and little is known about it. 90% of patients with this disorder have no cardiac problems, so we don’t know why Chloe had the initial cardiomyopathy.
Chloe is a beautiful baby girl who is now 10 months old and her parents have done an awesome job taking care of her and their twin boys. I can not begin to imagine what they have endured thus far and I have always wondered what can I do to help, but I would get discouraged quickly because their situation is so great that I can’t even begin to wrap my head around the emotion, the financial burden, the love and the sheer exhaustion of their whole situation.
I have been praying and praying, and I have faith that through God’s healing hand, all will be wonderful. In the meantime, I have found a way we can help: PRAY, Come out and Run. Spread the word and Pray some more!!! All the money that we raise for Chloe, will go to CHLOE!!! I am so excited I will repeat it…100% of all proceeds will go directly to Chloe and her wonderful family!
Thank you in advance for all of your prayers and support! I know Chloe and her family will greatly appreciate it!