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Re: Tyler

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Hi Red!

We chatted on Monday night (MistyBrown)

Anyhow...where are you in land and who have you seen? We live in Germantown, and Abigail goes to Gropman. She is located at town University. She has been great with Abigail, and she has been a true assest. Our best success has been building a team for Abby between different hospitals. Good luck.

Myst

redheadsemty wrote:

Hello I am new to this site.My son Tyler age 5 was been diagnosed with Mito at 3. He has dev.delays ,unable to walk independently, very little verbal skills,heat intolerance,seasonal respitory issues,seizures(which seem to be undercontrol right now with Lamictal). I was looking for anyone with similar symptoms.My heart breaks for all of you when i read all the other health issues going on for you. We don't have any Mito support groups around here. When i first found this website I was apprehensive about writing because Tylers issues seem so small compared to many of yours. But I'm sure I share many of the same frustrations.We live in upstate Ny. Our Metabolic Dr. is Korson in Boston.We have never got a specific diagnoses because The skin and muscle biopsies were normal.We were told by a Dr. in land that we should

just be greatful and count our blesssings beacause Tyler is at the "Milder" end of the Mito spectrum. I know there are many children that are struggling more but when this affects your life it is hard whereever they fall on the spectrum.Any help comments would be great!Your children are in my prayers! Please contact mito-owner with any problems or questions.

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