I watched it when I first visited the site.  Very interesting and it helps to know that others has the same difficulty I had when first diagnosed.   Kristina

DJ:

I thought it was a great video, too. I watched it when I first came. I had my close friends and family watch it, too. It is so much like my story.

I hope everyone watches it... It is a great idea to put it on the link page! Will you also keep it on the home page???

Sara

Sara wrote on Jun 10^th, 2004 at 11:33am:

Yes Sara, it will stay on the main page.  I think that video is the cornerstone the site is built around!  Everyone who has to find this site needs to see that video from the get go.

By the way, I've been in contact with Matthew's mom and dad recently (from the video).  They wanted me to pass on that Matthew is now 16 years old and doing absolutely wonderful.  He has been TIA free for over 10 years now and is living life as a normal 16 year old.

WOW!! Go David!!!

That is so great to hear! I was very touched when I watched the video. I had no idea he was already 16!!!

-Sara

I have watched it and it was great.  I plan on getting my friends and family to watch it.  Thanks Brent

I just watched it lastnight and it made me cry . Ror two different resons, one they were tears of hope for my mom, and second they were tears of regret that if we would have only known that mm is what she had we might have prevented her from having to go through all of this. Thank you so much DJ for starting this site. It has helped so much.                    Nikki

DJ-

Thanks for setting up this fabulous website that is an incredible resource of information and a fantastic support system for people with MM and their families.

I'm very happy that Matthew's story was able to provide some help to other people.  That was our goal when the people of Stanford asked us to be a part of the video.

As DJ mentioned, Matthew is now a healthy 16 year old and attends the local public high school and is enrolled in the mainstream classes.  He just finished his freshman year with a 3.5 GPA and we are very proud of him.

The video was filmed in 1994 about a year after his 2 bypass surgeries.  He has semi-regular visits with Dr. Steinberg every year or so and has not had an ischemic attack since about 4 months after his second surgery.

Any affects of moyamoya seem to be fairly minor as Matthew was treated before he had a major stroke.  He has been tested and shows difficulty translating visual images into written forms.  He has regular weekly sessions with a tutor to help him with his school work and it seems to be working.  He also exhibits muscular (and nerve ?) weakness in one of his hands but that doesn't seem to hinder his skills playing video games.

We feel very lucky to have "dodged a bullet" and are thankful that Matthew's deficiencies are limited to the ones we have observed so far and we know that Dr. Steinberg is directly responsible for Matthew NOT having a major stroke.

Congratulations to DJ for his skills and effort in setting up this website and I would be more than happy to provide any additional information that might help someone cope with moyamoya.

Greg

Well, I have to say I haven't watched the video, yet.  I just can't bring myself to do it yet.  I think you understand.

Greg---so glad to hear that Matthew is doing so well.....i have tried to watch the video 3 times, but I am going to have to ask my husband to install whatever needs to be installed so I can do it....it just does not come through.......God was, and is, certainly watching over your boy....I'm sure that the experience with MMD really make you appreciate the joys of today....it comes through in your post.....Love and Peace..pat

Wow . . . . . not sure where to start with this one!  I found the "baseball" in my throat growing larger and larger as I read the notes on this subject.

DJ - we watched the krontv video when Tara was diagnosed with MM in mid-May.  I watched the video of Matthew's family today.  Great idea to link them!  Thank you so much for everything that you do, all the way from your testimony to this website.  It provides an untold degree of hope for people, giving us a "connected" world to fellow MMers and their families!

To the Fong family - your story really hit home with us.  We, too, feel like we dodged a bullet, as our daughter was diagnosed prior to a major occurrence.  Tara is 17, and  Dr. Steinberg performed her surgeries on 6/2 and 6/9.  She is on the road to recovery, but still experiences some transient speech difficulties.  Tara hopes to resume all her usual activities within the next couple of months.  We live in San Jose, and would love to meet you sometime!  So glad to hear that all is well with Matthew, and hope for nothing but the best for all of you!  Take good care of yourselves!

Jill (Tara's mom)

DJ, I just now watched the video.

I wished I had seen it way before now.

I wish there was some way to get the knowledge about this disease out there for everyone to know it exists.  Maybe this could be a cause of why their mom or their sister or their uncle becomes suddenly numb on one side of their body, and the ER doc says it will pass or there's nothing they can do.

This Web site is just a start for getting the moyamoya information out there for the world to know about.

DJ, I personally thank you for Kristina finally having her "brain surgery" three years after her diagnosis.  Yes, back then it was a scary thing to even talk about; "brain surgery."

Dr. Steinberg and Theresa are angels from God.  DJ, you are too!!!!!!! 

Rhonda

Jill (Tara's Mom)-

Thanks for your kind words.  I'm sure Tara will have a speedy recovery and be resuming her normal activities soon.

Matthew also experienced speech difficulties immediately after his second surgery. His speech slowly returned  after 5 to 7 days.  We still aren't sure what happened. 

Please pass along our best to Tara...she's in great hands and will get the best post surgical care available.

Greg (Matthew's Dad)