Second Annual World Rare Disease Day School Event

What a difference a year makes.

This time last year, we were preparing for Vanderburg Elementary School’s first World Rare Disease Day event.  To our family, this was a HUGE gift from the principal and staff of my kids’ school.   The entire school left their uniforms at home that day, and over 90% of them wore jeans to school.   Jeans for Genes Day!   It was absolutely incredible.

Hannah was the star of the event.   Sharing her adorable smile and just pure happiness with many of the students and staff at Vanderburg as well as a reporter from our local newspaper.   She just charmed everyone that day!

Fast forward to this year.  It is somewhat bittersweet knowing that we will be going back for this event again, but Hannah is not going to be with us.   It is a bitter pill to swallow, but this event is so incredibly important.   It is even more important know that Hannah is no longer here because not only do we get to share her story again, but we help educate the school kids and staff at how important it is to fight for kids like Hannah whom are affected by genetic diseases that no one has ever heard of because they are so rare.

Tomorrow morning I meeting with the staff to share our plans for this event as well as hand out the hundreds of ribbon making kits donated by the Global Genes Project.

Last year, I was able to bring Hannah with me to meet the teachers and staff at Vanderburg to go over the game plan for the event.  They were able to meet the sweet girl they were helping us fight for.

Tomorrow morning, it will just be me sharing Hannah’s story.   I don’t know why I am nervous.   I am not usually nervous talking in front of people, but many of these people were able to meet Hannah last year.   They know that she has passed away.   But now her story has changed, and it is isn’t the way we wanted it to change.

My Hannah.  She was the fighter.  She was the one that made me want to be a fighter.   I just wish she was here to give me those smiles and cuddles that made this fight so much easier.

Building support

We are so lucky to have so many wonderful people working with us and sharing their ideas to help build our new nonprofit foundation!   Every single person who “likes” us, “follows” us, or “subscribes” to us can really help make a difference!

Please take a moment to help us build our base of support for our Little Miss Hannah Foundation by joining us in any of the following ways:

“Like” us on Facebook
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Little Miss Hannah Foundation

Impossible to sum up

I have spent a lot of time during the past few weeks on the new Little Miss Hannah Foundation website.   Talk about a labor of love!

The hardest part for me was writing Hannah’s story.

I want everyone who wants to learn about the LMHF to learn about who Hannah was, why she was so special, and how she was able to steal my heart completely.

It was so hard for me to “summarize” Hannah’s life into one page.   It was emotionally difficult enough having to write it all down in the first place, but then I had to edit and cut out parts of her story that were so important to our family, to me.

Her life was so much more than just the one page that I was limited to.   She is worth so much more than one page.  But reality is, if someone wants to learn about Hannah, they aren’t going to want to read an entire book.   (Insert my friends saying, “Hey you should write another book!”).

I like talking about Hannah.  I like hearing her name being said.   Rephrase that, I LOVE hearing her name being said.   It is one of the only connection that I have left to remind me that Hannah is not being forgotten.

Read Hannah’s Story.

Hannah’s legacy is taking shape

I don’t do well staying in bed all day crying.  Sometimes I feel like that is what is expected of me.   I do have my emotional breakdowns a few (or more) times a day, but for most of the time, I feel like I need to be moving forward.

Moving forward with my life.  Moving forward with the kids.  Moving forward with Daddy.  And most importantly, moving forward with creating Hannah’s legacy, the Little Miss Hannah Foundation.

The paperwork has already been started and filed. Next month, some very dear friends and I are going to sit down and start laying the groundwork for what we want to accomplish in phases.   We are also going to be doing what is necessary to become a 501c3 nonprofit.

I don’t want this to be a little one-person nonprofit.   I forsee huge things for the Little Miss Hannah Foundation.  Even though we will be starting with a Vegas chapter because I’m here, other chapters spearheaded by friends are also going to be coming along in the next 12 to 24 months as well as the ability to help families nationally.

I want the Little Miss Hannah Foundation to be as synonymous with hope for childhood rare diseases as Susan G Komen is for breast cancer.   My vision for what the LMH Foundation can become is quite complex, and it is going to take quite a bit of time to get it to fruition, years even.   But as a good friend of mine reminds me, we just take it one step at a time, and we will get there.

I’m glad I have this to work on.   This is what I am meant to do.    Within the next few months, this website will change into the foundation website, and I will keep my blog in a subdirectory.  Blogging is my therapy, much cheaper than any therapy out there.

I hope that all of you who have been following along on this journey with Hannah and I will continue to follow me as we build her legacy.   For now, we are asking those who want to follow along to join the LMH Foundation Facebook page ~ just click the link and press ‘like.‘

 

Hannah’s Legacy

Hannah is sleeping peacefully right now.  The combination of Valium-Methadone-Klonopin-Baclofen-Tegretol and chloral hydrate when needed is starting to work to keep her comfortable.  We are down to using the chloral just a few times a day now instead of every 4 hours on the dot.   We may need to up her valium a bit because it is wearing off before the 6 hours are up, but at least that is something that is doable.

I love the way her face looks when she is sleeping.  So sweet, so angelic.  During the night, I spend hours just laying next to her caressing her face and body, combing my fingers through her gorgeous hair.

I think of just how amazing she is and how much beauty and happiness she has brought into my life.   How much she has opened my eyes to some wonderful feelings, insights into life, and how many thousands of times she has warmed my heart and made me smile.

She is the missing piece I didn’t realize I needed to complete our family and makes me understand what pure love is.

One of my biggest fears has always been that, in time, Hannah will be forgotten.   I know that Daddy, Ethan, Abby, and I will never forget her, but that others in our lives will.  Family  members you don’t see that often, friends you chat with every once in a great while…those that really never got to know Hannah personally.  I don’t want them ever to forget her and how important my little daughter is to me and our family.

I think because of Hannah, I have found what I want to do with the rest of my life.  She has thrown me into this world of rare disease, advocating families, special needs, etc.   Through all of this, I know what I am meant to do.

So these past few weeks, Daddy and I have started to put together the paperwork for our Little Miss Hannah Foundation.  Yes, we are finally going to do it (many of you know we have been talking about it for almost two years).   I have been working on our mission and our general focus which, in summary, is working with directly with families affected by childhood life-limiting rare diseases by providing one-on-one support and guidance, local support groups, as well as a strong emphasis on sibling support and attention services (of which are horribly lacking).

We are so fortunately that Dr. Bernstein’s office manager (who was instrumental in putting together an amazing World Rare Disease Day event in their office this year) is willing to help guide us with the paperwork so we can get our 501c3 nonprofit status.   I have also had the support of some wonderful and talented friends who have offered to help as well.

This also works with my personal plan so when I finish my Masters in Professional Counseling that I could focus on using my experiences towards being a medical family therapist here in town.   When I started my masters earlier this year, I didn’t know what exactly I wanted to do with the degree (which at the time was the generic healthcare administration), but I know I wanted to stay in the medical world.

But this recent turn of events this month really opened my eyes as to what I want…what I need to be doing with my life, and this has given Daddy and I something to focus on these past months instead of just wallowing in our sadness.

I want the world to know that I have a beautiful little girl named Hannah.  She is an amazing fighter, a charming and sweet soul, and she means more than the world to me.  I want the world to know how special she is…I would scream it from the rooftops if I could.

I don’t want her ever to be forgotten…not for a second.   With this legacy we are creating for her, I hope she never will…and that her sweet face will be forever in the minds of our family and friends today and those families we meet in the future.

Hannah deserves it.

CBS local mention!

Students at John C. Vanderburg Elementary Support World Rare Disease Day!

World Rare Disease Day, school event update!

Last month, I shared my idea for creating awareness here in Vegas for World Rare Disease Day.   It was to have Ethan and Abigail’s school to wear jeans on 2/28 in recognition for Jeans for Genes day.

I asked a friend for help on how to begin this, and with her help, it has become bigger and more exciting than I could have ever hoped for!

Not only has the principal agreed to let us send out a flyer encouraging the students and staff to wear jeans on 2/25 (school is closed 2/28), but they are going to allow the entire 3rd, 4th, and 5th grade students to create bracelets for the Children’s Rare Disease Network’s 7000-bracelet project!   Can you picture 350 or so elementary students creating bracelets to share their hope for children like Hannah who have been diagnosed with rare diseases?

What is even more exciting is that the Las Vegas Bead Society has offered to volunteer their time and help getting us the beads and bracelet supplies for this event as well as offering volunteers to be in the classrooms to help make the bracelets.

The only ‘not sure’ we have right now is whether or not the school principal will allow media coverage for this exciting day.  I’m keeping my fingers crossed that she will, as it will tie in great with another event that I have in the works (will share later!).   But even if she feels it is not a good idea (students come first), just the fact that she is willing to open up the school to help create this kind of awareness for childhood rare diseases is more than I could have ever hoped for.

Next step is to get a flyer to the principal for approval.  Then we will know exactly how to plan out this event!



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