Hi All!

I ran across a story today on wgrz.com called "Organ Donation" that was moyamoya related.  I think you should all read the article if you can because Alison Gerchak's life ended the way we all are fighting to stop.  

The link for the article is at http://www.wgrz.com/news/news_article.aspx?storyid=26780

On the National Donor Memorial Website, there is a tribute to Alison and the following is stated in the tribute...
"The day before the Super Bowl of 2003, Ali was struck with a sudden and apparently inexplicable stroke.  Four days later, she was diagnosed with Moya Moya disease. This rare disorder, involving blockage of the main arteries and blood vessels to the brain, presently has no known cause or cure.  Ali died three days later."

Here are two more websites that you can go to about Alison:  http://www.alisrally.org/events.htm and http://farzfam.com/ali/index.htm.

I also sent an email to the Newsdesk at wgrz.com.  The email reads:

WGRZ Health Newsdesk:

I recently read Judy Wichrowski's story called "Organ Donation" on your website.  It was a very heartwarming story, but one that also brought tears to my eyes.  Why the tears, you ask?  Because it is a story that didn't have to end the way it did.  Not for Alison Gerlach anyway.  There is a cure for the disease moyamoya, and it is very possible for one to live with this very rare brain disease.  

My name is Michelle and I live in Fredericksburg, Virginia.  I was diagnosed with moyamoya back in October of 2004.  I had two brain bypass surgeries in November of the same year.  I am proud and happy to say that I am doing well and will be returning to work part-time in March.  

Moyamoya is such a rare brain disease that affects 1 in 2 million people today, that we know of.  In all honesty, I think more people may have this disease, but have not been diagnosed yet.  In fact, it is the media like yourself that could help get this story out and bring to the forefront of the medical field.  I know that when I was having symptoms of strokes, I was tested for months for different vascular diseases, and not once was the word moyamoya brought up until October.  This is a disease, that in fact, can only be confirmed by a moyamoya specialist.  

I believe that now that you have shared Maryann Satola's story of the life she was given, it would be wonderful if you could give us a story of the disease that Alison Gerlach could have survived from in the end.  

I invite you to visit the website, www.moyamoya.com for information about moyamoya.  It will give you the insight about this disease and the remarkable person that built a website for people that have been diagnosed with moyamoya and provides moral support to those that have been lucky enough to find this website.  

If you have any questions, please feel free to contact me.

Sincerely,
Michelle

If you want to send an email to the newsdesk, too, please send your emails to: sdurwald@wgrz.gannett.com, jjohnsto@wgrz.gannett.com, newsdesk@wgrz.com

Let me know what you all think about this.  I would love to know your thoughts on the story and the email I sent.  

Michelle

Hi Michelle,
 That's really a sad story.  What a waste.  Just makes me more resolute to make people aware of this.  Thanks for letting us know.
                               Ron

Thank you for the heads up on the article Michelle!  I've sent an email to all of them myself.  Hopefully something will catch someone's eye!

DJ

Keith,

Maybe I shouldn’t comment about this while I’m so emotional, but I feel I have to say this. You stated that Alison didn't present any symptoms of strokes prior to being hospitalized. This may in fact be true, and yes, we may not know the specifics, but please allow me to explain (IMO) what I feel Michelle meant by her statement, and that is… IF the medical community in general would have known more about moyamoya, “the disease”, perhaps Alison could have survived by being diagnosed BEFORE the emergency room visit and any catastrophic stroke. It breaks our hearts to hear what happened to Alison. People do not need to die with mm if diagnosed early. Many here have been through what Ali and her family has been through and our hearts and prayers go out to you and Ali’s family, but as a "moyamoya family" here ourselves, we feel as though Alison’s death was unnecessary in the sense that mm is all too often missed or misdiagnosed when symptoms of headaches, seizures, numbness, tingling, visual disturbances, sensory impairment, etc. occur. Tests can discover this devastating disease if there was more awareness in the medical community, that’s all she meant by her statement and to bring desperately needed attention to this disease, so NO ONE has to die. Yes, Alison may never have presented symptoms before her stroke, but why you feel as though it’s inappropriate to bring attention to Alison's moyamoya and the facts through the media, in this case or any other moyamoya case for that matter, to save lives is beyond my understanding.

Mar

Well said Mar I have to agree withe everything you said and I also wonder if Ali did have symptoms over the years that they just didn't know they were MM related like happened to so many people here. They don't thonk they had symptoms but in hynsight (sp) they did.
Media attention is the best way.
                Nancy                        

I second Nancy's statement - Well Said, Mar!  I know I had MM symptoms years before I knew what they were.  I didn't think, at the time, they were related.  It just goes to show that you have to take your health seriously - even if you think it's nothing, IMO, go to your doctor!  It's better safe than sorry.

-Shari

Yikes!  I didn't know that I was going to cause such a problem by sending that email to the tv station.  Just trying to help with getting the awareness out there.  I would think that this would be a good thing.  

Mar, thank you for the post to the board.  I'm glad you did.  I wasn't trying to upset anyone by what I did.  Just trying to get the information out there.  And thanks to everyone else that has commented on this.

In no way, do I have any clue as to what happened before Alison's stroke or after her stroke.  But IMO, I think the awareness of moyamoya is VERY MUCH NEEDED.  And that is all I was trying to do.  

I will digress from making any more comments.  I struggled yesterday on whether I should have sent the email or not.  

Michelle

Another note I’d like to mention is that the article does say, In February of 2002, 17 year old Alison Gerlach started to feel sick. She got headaches, felt weak and was suffering stroke-like symptoms. Her parents took her to the emergency room. They all were signs of mm, yet no mention in the article about the facts or "specifics" concerning mm the disease she eventually died of. We couldn't possibly know the specifics as to how stable Alison was after her admission, but it's stated that it took four days before being diagnosed with mm. I'm sure all our hopes and prayers are that of a quicker diagnosis than that, when symptoms appear. That is our goal in wanting awareness in the medical community.

On Alison's website, "about ali" the only mention of moyamoya, the disease she died of is,“This rare disorder, involving blockage of the main arteries and blood vessels to the brain, presently has no known cause or cure. Ali died three days later." Nothing more is said about mm and the disease she died of. If talking researching specifics, as Keith requested in his post, it’s not here concerning mm the disease; in fact it’s stated IMO, as if this disease is fatal, with no hope, and as we all know, if diagnosed and treated promptly, it is not fatal; the outlook is excellent. So all I want to say is; if talking "specifics, it's simply my wish to ask ALL to research the "specifics" on moyamoya the disease fairly.

Mar

Seachelles....

...you didn't strike a nerve..not in my opinion.  The only people who would have said that would be those who have not been exposed to MM as long as we have.   And the other thing when they said Ali didn't have symptoms all along...its very much likely they didn't know 'what to look for'....simple headaches regularly (not necessarily daily) is probably  a sign but of course "everyone" has headaches so one will never know.  Now what I have been through with Cara...unfortunately she is now having TIA's again but she is older and more verbal...telling me when she has headaches....now I think far back when she was one or two when she put her hands on her head...MM was happening...probably since her birth...so the longer you are involved, closely aware of every detail of your MM child or spouse or oneself...you are more aware of things...able to reflect further back in their lives...oh now I know why she had those headaches...and in Ali's case...which is VERY SAD...never had the opportunity to fully absorb the facts of MM before they pass away.  I also think Ali had something else more than just the MM as I know of a person that had another major stroke but also had MM...but MM surgery was delayed to take care of the first problem...cerebral hemmorage....when I asked the doctor why didn't they do the surgery right away than wait.  The doctor told me it would not have helped because the problem was at another part of the brain that was unstable.  Jeez...CarasMOM.

:)I, too. am glad that this may bring attention to MM. My sister just passed away with this disease. But in the mean time,,, my brother had two strokes. Doctors could not explain why. I mentioned to him that all his symtoms were the same as our sisters, he told the doctors, who in turn looked up MM and discovered he did have it also.  He had actually been having signs for about a year and a half. But those were blamed on poor circulation ( though they did not know why) or on his arthritis,,, maybe a pinched nerve,,, many excuses. He had had MRI's and MRA's in the past two years. Several times. But nothing was actually found until after the strokes,, luckly mild ones. AND,,, with the knowledge of our sisters MM. Notice I said the "knowledge". THAT is what we want to get out. I know we will all continue to acheive this. AND WE WILL!     MJS

Knowledge is Power, yet many doctors are afraid to admit they might not have had the knowledge they needed to save someone.

I know by reading on this site that sometimes MM hits fast and hard to the unsupecting, but how many people have to suffer for months and even years before the doctors will admit they don't know everything?

What are the chances the Ali would have been diagnosed in 4 days had her stroke been mild?

Would it have been marked up to some other disorder if it wouldn't have been such a bad one so fast?

By what I have seen, you have to be very young when you have your first stroke to get the doctors to really take notice, and even then you might have a few of them before they figure out the cause.

How many adults have a stroke and never know the cause? When Tyler had his stroke I was told that a lot of the time they never figure out what causes strokes.

Tyler was very lucky that he had a neurologist that wasn't afraid to say, "I don't know what this is, I will send you to someone else."

Rena

There definitely needs to be more awareness as far as moyamoya is concerned. My daughter had two strokes at 9 and 10 months of age but was not diagnosed with moyamoya until age 10 years old. We have found out that moyamoya was present in all of the early scans but was missed. It was in the early stages then but was severe by the time she was diagnosed. Amanda had all the signs of moyamoya for all of those years. Every time I questioned as to why a baby would be having strokes they told me to stop asking something that couldn't be answered. Well we got our answers but not soon enough.

I just got an email from a lady at channel 2 who wants to interview our family and meet Breanna, and share her story.  GET THE WORD ABOUT MM OUT!  When I first read her email I thought this is a joke!  But apparently, when I emailed Keith a while ago about all the chaos, he forwarded my email to this lady.   It is a bit strange considering we live in the southeast corner of Nebraska??  And they want to arrange a time to come here?  Im a bit leary.

Hi all !!

If anyone ever has a question about a reporter and whether they are legit or not, I can verify a reporter for any publication or radio/tv station in the country.  All I need is their name, station/publication, and where they are located.  If needed, I can also get credentials.  

Thanks,
Michelle

She says she is from channel 2 news.  Her first name is Mary.  Her email is mfriona@wgrz.com.  I went to the site, to see if their was any information on her.  I didn't see anything.