Monday, October 7, 2013

New meds and upcoming Noah news...

About 2 weeks ago I called Mabel's doctor and requested once again to try a new medicine that I believe will help with her movements and her crying.  They have been reluctant to try in the past but I am more persistent now than ever. 
Today was day 10 and we are at the middle of the desired dosage.
Today was an almost perfect day. 
No crying.  Little movements.  Not too druggy.  Super happy. 
And I am hopeful that this could be it, at least for now. 
In other news, Nora is still having a pretty hard time emotionally.  This weekend proved that time doesn't always heal all wounds.  She just can't believe that her daddy left and that he isn't coming home.  I  feel heartbroken and devastated and don't know how to help her.  She is meeting with a counselor and today I bought her a special gift to try and connect with her heart a little more.  All the while I feel so lost and helpless in the face of my oh-so-little girl who thinks she has to be much bigger than she is.  This is never what I wanted for her and I would give my life to make it different.  I hope and pray that she knows just how very much she is loved and how deeply I feel her pain. 
If you think about it, please say an extra prayer for her and if you see her, please be extra gentle.  She is tender yet distant and I just want her to feel thought about and protected.  She's so beautiful and so little...
I spent much of the day today in contact with local media.  Noah will be running into town (or very nearby) sometime at the end of the week.  We are super excited that he will be meeting Mabel and that we will get to be involved in some of the interviews and possibly even on the local news stations.  I will be posting more details here as they unfold and you can also check on my facebook page.  Please also remember to visit Noah on his website:

Today as I spoke to one of the contact people from a local news station I was reminded just how much I love to talk about my girl.  Of course I'm passionate about her, but I'm also passionate about so much more than that. 
Genetics, science, research, funding, awareness.
It's so important.  So big.  So essential. 

I want to remind people of some very key things in this life that I lead:
I know that my daughter will not live.  And very likely in my lifetime there may not be a cure for her disease.  But by the time that her siblings have children, or their children have children I would hope that there is a big enough movement of people who have stepped up and made a difference so that there may be a really good chance that rare disease is completely eradicated one day. 
That is the goal. 

It is big and even  seems outlandish but it is not impossible. We live in a world dominated by people who are incredibly smart and incredibly wealthy.  There is just no reason that children in our country or in any part of our world for that matter should be dying from rare disease.  And they sure shouldn't be suffering because of them while they are alive. 

I told Mabel's story today in a short recap over the phone. 
I will tell her story to the newspapers, on the radio, on local or national news. 
I will tell her story every single day for the rest of my life to anyone and everyone who will listen.
Because Mabel's life matters.  It matters big.
And I will never let it be in vain.

We are thankful for Noah and the opportunity he is giving us to raise awareness and spread the word about batten disease.  But let me remind you that we created "Mabel's Able" to spread awareness for all rare and undiagnosed diseases.  I have not lost sight of that and will purpose to continue my mission as long as I have the energy to do so. 
Thank you for your unending love and support.  We are always so grateful...
Updates to come...



irene kegel said...

you may want to check out this page..they make one of a kind jewelry often using your babies and angel babies foot/hand print. They also just started an allergy/medical line just in time for the school to start , just one more way to make the school staff aware of your child’s allergy or medical issue. They make wonderful Paw prints from any pets you may have. Plus they do fundraising for schools. PLEASE SHARE WITH YOUR FRIENDS

Of Pandas and Pirates said...

You are seriously one of my heroes Ramee! What you are doing for your family every day is so inspiring to me. I think of you and your beautiful children every day. I am sorry that Nora is having a hard time. Life changes are hard on everyone, but I can't imagine how much your heart aches for her.

Adam has not taken off his Mabel's Able bracelet since the day we opened that package. He gets asked frequently about it and we tell Mabel's story (what we can of it anyway.) I know I don't comment much because I'm always afraid of saying the wrong thing but I want you to know that I am thinking of you and I love being able to read this blog and feel like I'm connected to you even in this small way. Many hugs to you, Nora, Braden and Mabel.

Verena said...

I am feeling so sorry for Nora, Ramee. I think even as an adult it would be hard for me to deal with a divorce of my parents. God bless her little soul and i really hope that she feels better soon.

Andy and Jenni said...

Lamictal? Whatever it is, SO glad it is proving effective.
Andy has several theories about medicine and the future, and he firmly believes we'll be alive to celebrate a cure. Not for our girls, sadly, but still...
Give Noah a hug from the Betz family, please. He is something else, isn't he.
And so is Mabel.