Wednesday, September 30, 2009


We have been waiting nearly a month to get in with the MND specialist down in Sydney. On Friday we received a call from his office saying a miracle has happened and they had a cancellation for Monday at 12:30 can we make it, so of course we said yes. It was a bit pricey for flights so we decided to road trip. It took us about 13 hours but we made it!!! We were very fortunate to have our friends Steve and Jo down there who gave us a fantastic place to stay (thanks guys).

Dr. Mathew (the specialist) was great and when we met him we didn't know what to expect. A part of us hoped he would say I had been misdiagnosed and a part of us knew it wasn't so. So when Mathew said, "Yes you do have MND" Mike and I were not that shocked. Mathew was able to answer some of our questions.

Mathew looked at my MRI of my brain and you can see the bloody disease clear as day. He also did some reflex tests. I accept his diagnoses what I don't accept is a 5 year life expectancy. He said that he thinks I only have 5 years left I said I can beat that so he up it to 10 max and I said I have God on my side so even if I live 10 years and 1 day I will live longer than they expect, no question about it. Mike said well what about these stories of people living 14, 20 plus years with MND. He said I don't believe they have it and they may have been misdiagnosed.

I will not be seeing him again, there is nothing more he can do for us except answer questions when they arise. He said that I need a diet high in protein and that being a vegetarian would be a bad idea, thank God!!

I am not afraid, God will get us through this. I still have hope, faith, belief. I am in no way angry at God, I know he is not the one who has given me this. As I say to Mike in 5 years I may have limited function but you mark my words I will not be in a wheelchair nor will I be dead!!!

I still laugh, I still have lots of joy. I am in no way a mopey butt. I plan on squeezing every ounce of life out of the next 5 years that I can muster. I am looking at this as a blessing, hard to believe, I think God has given me a gift, he/she is saying "Stacy I am telling you when I want you to come home, now go and do and say all that you need." I have seen 7 year olds die of CF, 15 year olds die of cancer, 2 year olds die of illnesses they can't explain. I feel very lucky to have made it this far, I am also lucky it is not something that will take me in 9 months, like a brain tumor, I at least have time. And time is a wonderful thing.

I think I a staying positive because yes I have a terminal illness however I feel that if God sees fit he will grant me a miracle. Also who knows we may all die in 5 years time, but unlike everyone else we have been livin it up!

So thank you to everyone for your support and keep the prayers coming!


  1. Complacency is evil isn't it. Too true. I look forward to seeing your journey as you go forward and kick ass and eat LOTS of cheeseburgers (purely for health reasons of course)

  2. You are so inspirational! We can all learn and benefit from your wise and postive attitude. Thanks.

    Since the news is as such, it seems it's time to start the Stacy & Mike's Fun/ Health/ Help Fund. I'm not sure how to do it from Florida but we will definitely contribute as I'm sure many will. You could have a Fund raiser or ... just put your address on this blog and watch the checks comes in. Let us know. We love you so much and we want to help in some way.
    Love The Freys in Florida

  3. Heya Freys,
    The ultimate community are hosting a fundraising tournament to help with the travel expenses. The blog for it is
    There will be a bank account linked to that (and instructions: I think it will be something like "Neild donation") in the near future.
    Stacy - Tony has you on the flight list, so hopefully we will be helpful soon! Love Gen & Tony

  4. Cato, thanks for the info. Wish we could be there, sounds like a lot of fun!.. Anyway, I went to my bank and it's a lot "wire' from bank to bank so we were going to mail something. We need the address of the bank and the exact account info.

    Thanks, The Florida Freys

  5. Thanks everyone, Mike and I are overwhelmed with the love.