http://www.stuff.co.nz/stuff/dominionpost/4565205a6000.html

Mar,

First let me say ditto to your post. I'm with you on this one. This is tragic, sad and unacceptable.

This is Nic from our MM family.  She posted in July 2007 asking about ethnicities and moyamoya.  She was interested in the Texas study.

Nic posted in January 2007 to say her diagnosis of MM had been confirmed and she mentioned she was Chinese but her family had lived in New Zealand for over 140 years.  She also mentioned New Zealand is small and the doctors there weren't familiar with moyamoya.

I noticed a post on the Guest Book in September of 2007 from Liz Cleaver from New Zealand who mentioned there is a doctor in New Zealand familiar with MM.  However, I saw another post in May of 2007 from Trudy Lawton in New Zealand who mentioned no doctor in New Zealand is familiar with MM.  Trudy apparently lives in a remote area of New Zealand.  This tells me it depends on where you live as to whether a doctor is familiar with MM just like in the USA.  As we are aware, some doctors in the USA have never heard of MM as mentioned by many who have signed the Guest Book and many personal experiences mentioned on the Message Board. That's so unfortunate.

This is why it is so important to spread the word and educate about MM the disease and the treatment options so we don't have to read about our MM family members suffering and dying needlessly.

I'm glad to know that Nic found us but it is sad and breaks my heart to know she didn't get the treatment she so desperatly needed and deserved. She was young, had a family and had a lot to offer. This article speaks volumes to the person Nic was and I too am proud of her accomplishments. She certainly perservered through tremendous obstacles.

My sincere condolences and my heart go out to Nic's family.


Lore

This is Trudy Lawton from New Zealand.and this is my first time in the chat room. I actually read this in the Dominion Post and I too cried. Because like Nicola the nearest hospital with Neuro Surgeons to where I live was Wellington. I posted my story In May 2007 on this website.
I was emailed by MAR (from the States) and by Liz Cleaver here in New Zealand. Liz has a daughter with MMD. Liz gave me the name of an incredible Neurosurgeon, Mr Andrew Law in Auckland who is familiar with MMD. I have been to Auckland met with him, had a MRA performed and he will continue to monitor my MM from here on. We discussed the future and surgical options.
It is only through this website that I learned of Mr Law in Auckland. And only through this wonderful website that in a small country of only 4 million people  I no longer feel so alone, I am one of a large family.

My heart goes out to Nics family.
Her son looks like such a sweet/strong man.
She seemed like  a strong woman -- so determined to get her degree..

I WISH THERE HAD BEEN MEDICAL OPTIONS FOR HER

I'm crying for her family, for her strength, and for her possibly needless death.

Welcome, Trudy.
Glad you're finding and using this resource.
This IS a great family of mm'ers.
Sorry you had to join but am glad your aboard.

I hear New Zealand is a lovely country.

Linda A.

Trudy here once again,

Thank you all for your thoughts and prayers. MAR thanks for your reply to my email last night with Garys contact. My husband,Grant, has emailed Teresa this morning and has received a reply already. When he gets home from work will be gathering up my films copying notes and getting it off to Stanford.  
Your comments that we cannot let what happened to Nic happen again really brought home to us the reality of this Disease.

Cheers Guys/Gals

Trudy from New Zealand here, with a progress report.

We have explored the possibility of travelling to the US to have surgery by Gary Steinberg, however the cost is beyond our means...so we made contact with Andrew Law her in New Zealand once again.

At the end of September Grant and I went to Auckland and met with Mr Law for a second appointment with him. A repeat MRI/A was performed  Mr Law noted change. He stated "we need to take a serious look at surgery over the next 6 - 12 months.......".

I am so grateful to Mar and to Liz Cleaver for having made contact with me. In particular Liz, with Andrew Laws contact details....it does go to show that you do not have to accept the opinion of one, two however many Neurosurgeons, keep pushing untill you get a satisfactory answer. MoyaMoya is serious and needs to be treated that way.

Mr Law is reviewing my films with colleagues at a Neuro radiology conference an will update us after that.

I would not know there made been change MMD had I not have had another MRI/A performed, and in such short time.

It's scary stuff but we are onto it

Trudy

Hi this is Liz from New Zealand. Reading all these letters has made me sad for Nic. I had no idea she did not have contact with Andrew Law Neurosurgeon here in NZ. It has made me keep closer contact with people here in my own country. There is another lady here that has contacted me and I have been gently persuading her see Andrew but she has been put onto another guy. I have told her to get transfered to Andrew as he is our best and has been involved with your USA Dr Steinburg at stamford. Gee I still feel gutted to know about Nic. Yes she did not have to die through lack of knowledge in our health system. God bless you all for your support to all concerned Liz

Hi there .. hope all went well. My wife recovering very well. She had her surgery 7 yrs ago. There is always hope

Dean V
Hamilton NZ

Hi Trudy,

Thank you for the update. I’m so glad to hear your first surgery is over with and that you’re scheduled for the second. I hope all went well. I’ve thought of you often. My prayers have been with you. I love your determination!!! Being aggressive and fighting to get the proper care you need and deserve is what saves lives with this disease. You go girl!! I pray all goes well through your next surgery, so you can live a long, healthy, normal life. We’ll certainly be right there with you in spirit the whole time.  

Please keep us posted!

Mar

It's just gone three months since my second EDAS and Burr Hole surgery.
I had a Stealth MRI/A performed prior to surgery. Which my surgeon used to guide him through the procedure. All went well, and my recovery has coming along nicely.
Following surgery Mr Law said there is no reason for me not to live a long life now...which lifted a huge weight from our shoulders.
It is as though I've got my brain back, and with it my life. My husband and I recently went to a Rock concert in Auckland and had an absolute ball. I could never have coped with this prior to my surgeries, nor would I have contemplated going.....Life is good.

Thank you all for your support throughout,

Trudy and Grant Lawton

Merry Christmas and Happy New Year for many many years to everybody.