Little Miss Hannah Fight against Neuronopathic Gauchers Disease type 2/3 — Our Fight against Gauche

Time 2021-10-10 22:33:03

Web Name: Little Miss Hannah Fight against Neuronopathic Gauchers Disease type 2/3 — Our Fight against Gauche

WebSite: http://littlemisshannah.com

ID:201043

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Fight,against,Hannah,Little,Miss,Neuronopathic,Our,or,gaucher'sdisease,gauc

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keywords:gaucher's disease, gaucher's disease type 2, gaucher's disease type 3, rare disease, childhood rare disease, neuronopathic, d409, 84gg, lysosomal storage disease, world rare disease day, terminal illness, siblings
description:Hannah Ostrea's journey and fight against neuronopathic Gaucher's disease, an extremely rare and fatal life-limiting genetic metabolic disease. As a result of raising a medically fragile child with this rare disease diagnosis, I have become a mom on a mission for rare disease awareness, pediatric hospice and palliative care, and forever the fighter for a cure for Neuronopathic Gaucher's disease. Hoping to connect all families of children with Gaucher's type 2 and type 3 together.

Little Miss Hannah

Our Fight against Gauchers Disease type 2 or 3

HomeMeet HannahHannahs FoundationIn The NewsGaucher’s 2/3 If you have a child with GD23 GD23 Facts GD23 Resources GD23 Physicians GD23 Research NewsHow to Help! donate volunteerContact@LMHF on TwitterSurvivingHannahs FightLMH FoundationGauchers DiseaseRare DiseasePics and VideosSo Long, Farewell6 Nov by Carrie

My Little Miss Hannah

I am coming up on two years since my sweet little girl passed away.  Two years.

How could two years have passed yet I still feel as raw and affected as if it was yesterday.

I have changed so much in the past 5 to 6 years, especially the past two.   Things that were once important, no longer have as much weight.  I have developed more tolerance and patience in some aspects in my life yet in other aspects I have lost these same things.

A dear friend who has known me for more than a decade shared with me what changes she has seen in me.  I was really surprised that it was that noticeable.   I dont feel like I am that different, yet I can see how I am.

I am content with this new me.  Happy?  I admit I am fearful that I will never truly be happy again.  Although I do have many happy moments in my life, and I am working to embrace the good in my life.  But overall happiness?  That weighs on me.

In the end, I believe my journey sharing Hannahs story on this blog is now over.  My focus is now working on Hannahs foundation, being a mom to my two older kids, and working on those passions that help me continue to be a parent to Hannah.

I am forever a grieving mother but I dont wear this on the outside the large majority of the time.  People dont know what to say or how to act when they find out.

However, I want the world to know that I am a mom to three children.  Two at home, healthy, and growing up one who is up in Heaven who I miss terribly and think about often.  Three children.  Three.

Forever my little miss Hannah.  Forever my little love.  Forever in my heart.

I plan to keep this blog online since a lot of people who are researching Gauchers Disease type 2/3 find it and, I assume, use it to find more information about this horrific disease.   

~ Filed Under: Surviving This is How I Parent Hannah5 Aug by Carrie

Our 2nd Annual Little Miss Hannahs Rainbows in the Wind Event

It has been a major roller coaster of a month.   So many wonderful things happening yet all of it clouded by the simple fact that Hannah should have been turning 5 a week or so ago.

We had Hannahs 2nd annual Little Miss Hannahs Rainbows in the Wind event, and the turnout we had was phenomenal.   Not only did we raise more money that last Julys event, but we had such an amazing group of organizations and companies who donated their time, energy, and resources to make this night special.   From top Vegas childrens entertaining groups to our amazing DJ and photographer to over 2 dozen volunteers who came out just to help make our event run smooth!   The outpouring of love and friendship that came to support us at this event so many wonderful family, friends and colleagues including 4 of Hannahs awesome nurses, a number of her therapists, and friends we have met in the 3 years we have lived in Las Vegas.

(We should be getting pictures next week from the event our photographer does amazing work).

The morning after the event, we surprised Ethan and Abby with a trip to visit Hannahs favorite characters ever we went to Disneyland!  We had a fantastic time as a family, letting loose and just enjoying ourselves.   We did two special things that I had wanted to do at Disneyland to celebrate Hannahs birthday we did a balloon release from the park to her, and we had brought her Minnie Mouse with us to take our family picture.   The kids had so much fun, we hope to go each year to celebrate Hannah.

We purchased a yellow Mickey balloon, and we each wrote a special message to Hannah on it. The kids released it right in the center of the park!

We needed to get away and decompress from everything the stress from the event, the overwhelming sadness we were all starting to feel as her birthday approached, to regroup as a family.  At Disney, we all talked about Hannah quite a bit (especially Ethan, which was unusual since he is usually quiet), and it felt like she was there with us many times.

Today, we did a delivery to another Little Miss Hannah family.   It was the same little therapy chair that we wanted so desperately to get for Hannah.  We actually were given a loaner for a while for Hannah, but we never could afford it because it wasnt medically necessary.    But today I got to give this chair to a special 3-year-old little girl who I just instantly fell in love with.  She reminded me of Hannah  at times, especially how she was instantly hooked on her favorite television show!

We (my hubby, kids and I) all walked away from this delivery today feeling absolutely wonderful.   Ethan was proud because he was the one who assembled the chair so we could deliver it ready-to-go (He has become our master builder!).   We were able to give this little girl something we were never able to give Hannah, and by doing that, we all felt like Hannah was right there with us.

I know this little girl will get so much use out of this chair and tray set, and because of my Hannah, we did what we set out to do enhance the quality of life for kids like Hannah in our community.

I read something tonight that completely nails it on the head of why I am so passionate about what we do with our Little Miss Hannah Foundation.  It is because THIS is how I am able to continue to be a mom to Hannah, to parent Hannah.  This is how I get to do things for her even though she isnt here anymore.   Hannah lives on in the hearts of so many people, even those who didnt know her when she was here with us.

I am proud of my children, all three of my children.  Ethan and Abbys lives are immersed with the concept of giving, volunteering, and taking care of special children.   I truly believe that this lifestyle we live along with their schooling, sports, friends, and other activities will really get them prepared for their futures.

And I am most proud of Hannah for being who she was, fighting as hard as she did, and for making me a much better person than I was just 5 short years ago.   I think back to the eulogy I gave at her funeral, and I hope she is as proud of me as I try to live up to my promise to her.

~ Filed Under: Surviving Few weeks to go4 Jul by Carrie

There are just a few weeks left until what SHOULD have been Hannahs 5th birthday. Im still trying to sort out how Im feeling about this.   Obviously, that is why I continue to blog when I need to get something off of my mind.  Im waist-deep into planning for our big fundraising event on []

[Continue reading...] ~ Filed Under: Surviving Little Miss Hannahs Rainbows in the Wind Event July 24th!24 May by Carrie

Only two months until our big July event!    Please be sure to join us at Town Square on July 24th, 2013 at 5:30 pm. Picture it…hundreds of colored feathers blowing in the wind, carrying messages of love to those children, family, and friends that have passed away. On July 24th, you can join our []

[Continue reading...] ~ Filed Under: LMH Foundation The Irrational Stage of Grief10 May by Carrie

We always hear about the 5 stages of grief.   I think they  need to add one more Irrationality.   Seriously.   In my head, I know things are a certain way, but convincing my heart that what Im thinking is something I havent been able to figure out. Mothers Day is coming up []

[Continue reading...] ~ Filed Under: Surviving Little Miss Hannah Continues to Impact our Rare Disease Community11 Apr by Carrie

Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond (Reposted from My San Antonio media) (BPT) Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face. “We went through a number of specialists until we found a team []

[Continue reading...] ~ Filed Under: LMH Foundation Next Page In Hannahs Memory

Hannahs Fight

Latest CommentsMel on Few weeks to goCristina (Bertrand's mom) on The Irrational Stage of GriefMilena on The Irrational Stage of GriefPatty Taormino on Little Miss Hannah Goes to Washington!Cristina (Bertrand's mom) on The Nightmares Return LMHFoundation BlogOur 1st annual Tee up FORE Rare was a great success!Meet Jenny Krshul, our New Executive Director!Thank you Chuck and Judy Goodman!Our Little Miss Hannah team is growing!2018 Essay Scholarship Winner – Griffin Becker

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Hannah Ostrea's journey and fight against neuronopathic Gaucher's disease, an extremely rare and fatal life-limiting genetic metabolic disease. As a result of raising a medically fragile child with this rare disease diagnosis, I have become a mom on a mission for rare disease awareness, pediatric hospice and palliative care, and forever the fighter for a cure for Neuronopathic Gaucher's disease. Hoping to connect all families of children with Gaucher's type 2 and type 3 together.

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