Archives for August 2012

Jumping into the Big Pond

28 Aug by Carrie

Next month, my husband and I are going to the first annual RARE Tribute to Champions of Hope Gala and the patient advocacy meeting they are hosting the next day.  This will be a place where patient communities, like our Little Miss Hannah Foundation, can engage with each other and experts on various topics ranging from legislation to non-profit business models.

At the 2012 Tribute Gala, we will honor individuals for their contributions in the areas of advocacy, science/research, industry, policy and global collaborations.

Please join us for a night of inspiration and hope as we recognize individuals and organizations that are working tirelessly to help millions of children and families impacted by over 7,000 different types of rare diseases.

As ANYONE who reads my blog knows, I am very, very passionate about create awareness for childhood rare diseases.   It isn’t something that I do for fun.  It is something that I HAVE to do.  It is so hard to explain because before Hannah I never felt very passionate about any cause.   But this has grabbed my heart completely.

Awareness for life-limiting children’s rare diseases, my focus…It is something that just has to be done.

Chris Mann

So next month, we are going to this conference to meet all of those people who have fought so hard for rare disease.   The “celebrities,” if you will, of rare disease awareness.  I have no idea what to expect at the “Gala” that night, but I am thrilled that we are able to go.

Best of all, I get to be a small part of that evening.  I was asked  to submit Hannah’s story for their “patient stories” section of the program.  To me, that was a huge honor!   All these people from around the country are going to read about me and my daughter – me, just a “Mom on a Mission” living in Vegas.

Besides, seeing Chris Mann (from “The Voice”) performing that night at the event is NOT a bad thing either!

~ Filed Under: LMH Foundation

Bring on the pain

16 Aug by Carrie

Hannah may not have been able to eat the candy, but that did not stop her from eating the wrapper with the candy inside! Oct 2010

The kids go back to school in 11  days.    This was such a crazy summer, and it was very much our most frugal one ever.  But we are almost there.   We did have some great times like visiting with friends in Northern California and Reno plus lots of shows on fillaseat.com as well as taking in some fun community activities.  The kids are completely tan thanks to all the swimming at my inlaws house and other friends houses.  Abby and I did quite a bit of mommy-school to help get her prepared for third grade.   And we can’t forget our LMHF inaugural event which was, by far, the biggest thing we did this summer.

So much different than last summer.

This time last summer, we were still fighting for Hannah.  Driving to Los Angeles  to meet one of the top movement disorder specialists in the country.   Never would have thought a few months after that visit, Hannah would be gone.

For me, the nights still suck, the meds I am taking still take a few hours to kick in.    But it is almost like a willful punishment because I want so much to remember Hannah, trying to remember the little things that are slowly disappearing from my memory, wanting to relive the times that she was here ~ remembering what it was like to feel whole again.

Her death has left such a massive hole in my heart, my life.   But I would rather feel the pain and get to be with her, even in memories, than not think about her at all.   That old saying – better to have loved and lost than never to have loved at all…so true.

The love I have for Hannah is … there are no words.

 

~ Filed Under: Surviving

Our Rainbows to the Sky Event

1 Aug by Carrie

event 34(click for event program)

On July 25, 2012, the Little Miss Hannah Foundation launched ourselves into the Las Vegas community with our “Rainbows to the Sky” event, our first fundraiser and community event.

DJ Miguel Guidos of Soli Concepts Entertainment kept the crowd going with great music, audience participation, raffles, and the highlight of the evening…three balloon releases sending up over 400 balloons.   Each of these releases sent balloons with personal messages written on them up to heaven.   They were all incredibly moving, especially the 7:30 pm special children’s release…

(click for more details, pictures, and videos)

~ Filed Under: LMH Foundation