My Story

I am Haley and I am 7. I have Cytochrome C Oxidase Deficiency, a mitochondrial disease, along with other underlying mitochondrial issues that have not yet been diagnosed. I also have an underlying seizure disorder that is not controlled nor diagnosed so i have seizures every day. Mom and Dad created this page to help keep all my friends and family up to date on me.

Journal

Monday, February 9, 2009 12:31 PM, CST


Sorry it has been so long everyone mommy is a very busy person taking care of me and chasing addie! Ugh is she a handful, very funny but a handful!! I am doing well i just had a check up with dr b at chop and they are going to switch my seizure meds around to see if they will help at all. They beleif that my seizre disorder has developed into lennox gaustat a seizure disorder so they are hoping that this medicine will work better. I am still having lots of problems with my tummy so mommy is looking for a new GI dr who will be more proactive.

Addie well lets see she is still cute, loving and a trouble maker. She is running all over the house with her little walker chasing the dog...poor gunner wants to run away we think! She is progressing nicely and we have NO complaints other than she needs to learn the word "NO"! lol


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E-MAIL AUTHOR

bethann@remaxaction.com

HOSPITAL INFORMATION

Childrens Hospital Philadelphia
civic center blvd
philadelphia, PA

215-590-1000