Marie......

[Guest guest]

Marie, i am on this list too, but very quiet here all the time. Arlene mom of mikey, who now refers to himself as ! ****************************************************** --- Marie Di Pietro wrote: > , > > Thanks:) Our experience in Cleveland was very > positive with all we came in contact with. I > sampled numerous treats from the Deli.:) > > As soon as the confusion settles I'll give you a > call. > > Hugs, > Marie > Introduction > > > Hi to all, > > My name is Marie and I am mom to eight children > ages 23, 20, 17, 15, 11, 7, 5 and 2 years old. We > live in Pennsylvania outside of Philadelphia. > > I subscribed to this list about 2 months ago and > have been reading and trying to absorb the vast > amount of information I've received here. You've > all helped tremendously without knowing it. I > never formally introduced myself prior to this as in > my heart I was hoping that I really didn't belong > here and there was some other explanation for the > heartbreaking medical things we have been dealing > with in our kids. > > We saw Dr. Bruce Cohen with four of our children > this past week (19th and 20th) and arrived home on > Friday morning. Based on all the testing results we > provided (muscle biopsy, amino acids/organic acids, > etc...) and a long list of clinical > symptoms.........Dr. Cohen diagnosed us with a > Mitochondrial disorder. We're probably dealing with > MELAS. > > I'm rather fried at the moment. It has been a > long and exhausting road to this point of feeling > like I see things that really aren't there and many > times being made to feel like I am the one with the > problem and not my kids. I think you all understand > what I mean by this. > > The very first person who was able to put this > all together for us was Ken Hirsch from the list. > We met him for the first time several months ago and > after reviewing all the info we brought him told us > he felt we were dealing with Mito. He is now our > Doc for six of the kids. We feel very blessed to > have him. He has been a wonderful source of > information and support for us and is a truly > wonderful human being. Poor guy had no clue what he > was getting himself into taking us on. :) > (Thanks Dr. Ken.......I promised you that I would > seek support after Cleveland and I WILL be at the > next DEL VAL meeting! > > There are a couple moms on this list that I know > from another list. Hi Kass, e, Heidi!!! > > The list of kids and symptoms are long. If > anybody really wants to know I'll be happy to share. > I didn't want to write a book on my first post. > > My very first question to you is regarding CoQ. > With a family this size we are talking a lot of CoQ. > Are any of you able to get this covered by > insurance? What are the best sources to obtain it? > I need liquid and pills. At this point four of the > kids are going to start carnitor as well. Things may > change once the tests Dr. Cohen did are back. > > Any advice would be greatly appreciated. > > Marie > > > > > > > Please contact mito-owner with > any problems or questions. > >