Re: Introductions? So sorry, so late

[Guest guest]

Sorrry I am late with this.

I am and I have one daughter who has 2 beautiful girls. I am the proud grand mother. My oldest grand daughter is 10. She is beautiful, bright and healthy. And Hannah is 5. Hannah is beautiful and a treasure, so brave and works so very hard. Hannah has mito.....complex III. She has a tremor in her right hand, ataxia, developmental delays, fine motor problems, sensory integration issues, speah problems,and weird behavioral episodes. WE all live in TExas

The children have been placed with their father because he has accused my daughter of having munchausen syndrome by proxy and the courts believed him when he said Hannah has no problems in his care. He controls her behavioral episodes with a wooden spoon or holding his hand over her mouth until her screams turn in crying and fear. If this were happening to any one other than a child in a custody battle then it would be against the law to mistreat someone with a disability. However it doesn't count now, not in family court. We have proof of all the bad things that are happening.

Our issues are made worse by the ignorance of the Texas courts and the doctors who are to afraid of being sued to get involved. I have calls in to the Texas Mito docs that were recommended by UMDF. However they are too busy. They also are afraid of "court and family issues". I have run out of ideas.

If the courts knew about mito and if the father wasn't such a wimp. But we have to deal with what we have. Stacey Fleming wrote:

I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is

delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions.