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Hello, I am new to this. My 3 month old daughter was diagnosed with MMA a 5 days old and we finaly recieved the results of her skin biopsy and she is mut 0. I am having a hard time finding encouraging information about mut 0. Most articles I read on the internet state most kids dont live past 6 years old. Anyone with info??? Words of encouragement?
Hi - I invite you to join the Organic Acidemia Association - we are a parent support group that has been around for over 20 years....there are many MMA Mut 0's that are living in their 20's! The fact your child was caught on newborn screening is great news - something us parents have been advocating for years....please join our listserv and you'll be connected with many parents whose children are living and thriving with their organic acidemia disorder.
www.oaanews.org
Thank you for the welcome. Unfortunantly my daughter was not diagnosed by the newborn screening. She had a metabolic crisis on day 3 and ended up on dialysis. She appears to be thriving at this time.
Hi there, I'm sorry that it's been so long since you received a response, I was unaware of this website. My name is Lori Sanchez and I am the Communication Director of the OAA. I have a 12 year old son with MMA mut 0. If you'd like to chat you can email me anytime at Loriasanchez@msn.com.
thank you
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