I am so happy to have found this site.  I don't want to discourage anyone or bring anyone down.  This is the only place I have found where I can talk to others who are living with this.
I lost my 5 year old daughter Arianna in January.  She passed on the 15th, my birthday, following bi-lateral surgery on the 12th.  She was misdiagnosed and by the time we got to Dr. Scott, it was too late, but he was her only hope.  She was destined to leave and we all now have a special little angel watching over us. 
I hope my being here is okay.  I need to know others are living through this.  My daughter and I will be undergoing the testing for Moyamoya next month.
There are some early indications I may have this.  I pray my living daughter doesn't.   You all are so very brave. 
I will read all of your posts, but right now, it is very hard to do this.  I have been looking and can't seem to find many things on this disease online.  I understand there is someone here who will be starting an organization.  I too am looking into this.  I have a huge list of things I want to do in Arianna's memory.  I am determined to change the way the diagnosis is carried out.  It was one year ago that she had her first seizure and it was brushed off as a "growing spell".  If they had done the MRI then, she would still be here and I would be posting to a different tune.
For those of you waiting for surgery, I send my best and please understand, she is not the norm.  That is why I am seeking legal counci.
For those who have undergone surgery, I am anxious to hear of your recovery and how life has been since.
I hope I have  not frightened anyone. That is not my intent.

Hi Tammy-----I am stunned and saddened to hear about the death of your beautiful Arianna-------and I feel the depth of your pain.......I have always thanked God that it was me who was stricken with this mm and not one of my beautiful daughters. I have a 4 year old, a 10 year old and a 13 year old.

By the way, I am the one starting "The Moyamoya Foundation---Helping Hands, Caring Hearts"  You can real all about it on the General Post on the Message Board.......My very deepest condolences on the loss of Arianna.....you are right....she is now an angel looking down on all of the suffering people, especially the suffering children......I think we should officially name her, Angel Arianna, the moyamoya special angel.  I do not know if you are an especially religious or spirtual person, but I sense from your post that you are, otherwise, you would not have used the word Angel.  WE are here for you, anytime you need.  You can e-mail me or call me anytime you need to at 201-930-1163.  Be brave and do not be afraid-------my doctor said that, so far, he had never seen a case of parent/child moyamoya. We will be praying for you and your other child every day.  Again, my deepest and heartfelt condolences........God is with you, always.  God Bless you.  PatM

Tammy,
             I'm am so sorry to hear about Arianna. My heart goes out to you I can unfortunately relate. My daughter who was 20 at the time was also mis- diagnosed the prevoius year before diagnosis and ended up with 4 bad strokes, is doing much better, but still has a very long way to go. I can sympathize with your loss as I lost my son at 13 yrs. old but he mentally like an 8 yr. old it was not from mm, but a lose still the same. The only way I believe my husband and myself got through it was seeking a support group called Compasionate Friends they are far spread maybe they're in your area. All the other parents have lost children and they all tell they're story and it seems no matter how your loss happens it seems like there's always someone there in worse shape than you, and it just helps to share it. Good Luck and hang in there I don't want to say it gets easier, but it gets a little easier to deal with in time, time is definately the healer of all wounds.
                       Nancy   

   Tammy,It certainly is OK to be here.Your right this is a place for understanding,comfort anad support.I think you are very brave to be telling your story.I am so sorry to hear about your loss.Words can not even begin to help but know that you are in our prayers.I wish too that we could have ehlped my daughter sooner.We came very close to losing her between surgeries.She suffered  severe strokes .She was like an infant and spent a month in rehab.We feel ever so fortunate to have her with us.She is just starting to walk again but has no usefull movement of her left arm.We are still holding out hope this will return somewhat.My bigest hope is that we can educate Dr.'s and parents to treat children more agressively.and listen to parents concerns. Thank you for sharing  your story.(((HUGS)))
Mary Grace  rgrace5@aol.com

tammy
         i am so sorry to hear of the loss of your little angel arianna she will alway have a special place in the heart of all moyamoya sufferers and their families my son jared was diagnosed in march after being wrongly diagnosed since 2001 he just had his first surgery april 30th and is home recovering he still has one to go not sure when that will be know that you are a part of our moyamoya family and always will be we will be there for you anyway we can keep us posted in regards to your and your daughters testing i hope everything goes well i am also having my daughters tested jared has downs syndrome which is probably why he has the moyamoya but with this diseaese one can never be to careful god bless your family and angel arianna