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Little Miss Hannah - Fight against Neuronopathic Gaucher's Disease type 2/3 — Our Fight against Gaucher's Disease type 2 or 3

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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Little Miss Hannah - Fight against Neuronopathic Gaucher's Disease type 2/3 — Our Fight against Gaucher's Disease type 2 or 3 | littlemisshannah.com Reviews

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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.

<META> KEYWORDS

1 gaucher's disease

2 gaucher's disease type 2

3 gaucher's disease type 3

4 rare disease

5 childhood rare disease

6 neuronopathic

7 d409

8 84gg

9 lysosomal storage disease

10 world rare disease day

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little miss hannah,meet hannah,hannah’s foundation,in the news,gaucher’s 2/3,gd23 resources,gd23 physicians,how to help,donate,volunteer,lmhf on twitter,surviving,hannah’s fight,lmh foundation,gaucher’s disease,rare disease,pics and videos,by carrie

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Little Miss Hannah - Fight against Neuronopathic Gaucher's Disease type 2/3 — Our Fight against Gaucher's Disease type 2 or 3 | littlemisshannah.com Reviews

https://littlemisshannah.com

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.

INTERNAL PAGES

littlemisshannah.com

1

So Long, Farewell…

http://littlemisshannah.com/2013/11/so-long-farewell

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. So Long, Farewell…. 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 am content with this “new me.” Happy? That weighs on me. I am forever a “grieving mother” but I don’t wear this on the outside the large majority of the time. People do...However, I want the...

2

Rare Disease

http://littlemisshannah.com/category/raredisease

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. Hannah is making her mark! The Little Miss Hannah Foundation was awarded the Genzyme Patient Advocacy Leader 2012 Award. For our school-involved World Rare Disease Day program! We were only one of 9 organizations world-wide to receive this honor along with a grant to help us expand our program. And Cure 4 the Kids. For the past two years. Our program designed for February 22, 2013, has confirmed the part...

3

Little Miss Hannah - Fight against Neuronopathic Gaucher's Disease type 2/3 — Our Fight against Gaucher's Disease type 2 or 3

http://littlemisshannah.com/page/2

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. Little Miss Hannah Goes to Washington! It has been an absolutely crazy, wonderful, inspiring, and emotional week! Filed Under: LMH Foundation. Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness. Filed Under: LMH Foundation. Scentsy Fundraiser for Little Miss Hannah Foundation. The money raised through this fundraiser will go directly […]. I was ne...

4

Pics and Videos

http://littlemisshannah.com/category/pics-and-videos

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. Happy birthday, Hannah. I miss your smile, your wiggle, and that adorable little laugh of yours. Most of all, I miss your snuggles, cuddles, and just having you are my arms. Not having you hear with me hurts my heart, my soul. Daddy, Ethan, Abigail, and I miss you so much. Filed Under: Pics and Videos. How do you thank someone for treasured memories? Was so important to our family. This picture captures ...

5

Little Miss Hannah Continues to Impact our Rare Disease Community

http://littlemisshannah.com/2013/04/little-miss-hannah-continues-to-impact-our-rare-disease-community

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. Little Miss Hannah Continues to Impact our Rare Disease Community. Little Miss Hannah and her mom, Carrie Ostrea. Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond. Reposted from My San Antonio. BPT) – Getting a diagnosis is just the first of many challenges patients with rare diseases and their caregivers face. Physicians (both primary care and spe...

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lageansgoodies.blogspot.com

Yummy! Yummy! Yummy!: Get Your Senior Discounts Here and Save That Money (Age 50 and Up)

http://lageansgoodies.blogspot.com/2013/09/get-your-senior-discounts-here-and-save.html

View my complete profile. Sunday, September 1, 2013. Get Your Senior Discounts Here and Save That Money (Age 50 and Up). I found this list on Facebook, posted by Abby Slack Owen. For those of you who aren't seniors, please do one a favor and pass this on to them! YOU must ASK for your discount! Applebee's: 15% off with Golden Apple Card (60 ). Arby's: 10% off ( 55 ). Ben and Jerry's: 10% off (60 ). Bennigan's: discount varies by location (60 ). Bob's Big Boy: discount varies by location (60 ). Tea Room C...

gaucherdisease.org

Gaucher Disease - Type 2 and Type 3

http://www.gaucherdisease.org/gaucher-disease-type2-type3.php

Gaucher Disease Treatments and Drugs. What is Gaucher Disease? Gaucher and Parkinson's disease. Gaucher Type 2 and 3. Real Life Gaucher Stories. Physician and Treatment Location List. Position Statment for Treatment of Gaucher disease. Resources and Other Relevant Links. Resource of the Month. News at a Glance. NGF Gaucher Network Registry. NGF Financial Assistance Programs. Gaucher Chat / Ask Jeff. Gaucher Network Registry Brochure. NGF Spanish Gaucher Brochure. Gaucher Articles and Stories. Gaucher dis...

visionsoflagean.blogspot.com

Visions of Life: A Journey Towards Health and Wealth: June 2009

http://visionsoflagean.blogspot.com/2009_06_01_archive.html

View my complete profile. Photo Contest Submission - UPrinting. Secret Summer Diet Foods: Slim down by enjoying th. Antibacterials Are Not the Answer. 6 Health Mistakes Smart People Make. 8 Great Family-Friendly Foods that Help Fight Canc. FDA Warns of E. coli Risk From Nestle Toll House C. The FitFlop Craze: Fashion or Fitness? The Best Diet for Allergies and Hay Fever. Skip Breakfast, Get Fat. SKINNY SIPPING: Drink Pounds Away. My Brothers Diagnosis: Arteriovenous Malformation. Monday, June 29, 2009.

visionsoflagean.blogspot.com

Visions of Life: A Journey Towards Health and Wealth: May 2009

http://visionsoflagean.blogspot.com/2009_05_01_archive.html

View my complete profile. Depression: Recognizing the Physical Symptoms. 10 Symptoms of Adult ADHD. What Is Lyme Disease? Lyme disease is an infectio. Prostate Cancer Risk Factors All men are at risk . Part 2 in learning more about this disease that is. Understanding Prostate Cancer - the Basics. I received this article from Janet Jarrell. After . Friday, May 29, 2009. Depression: Recognizing the Physical Symptoms. Muscle aches and joint pain. Depression can make any kind of chronic pain worse. Sleeping ...

jasonandtishelleward.blogspot.com

The Ward's...

http://jasonandtishelleward.blogspot.com/2010/07/little-bit-of-summer-random-ness.html

Jason, Tishelle, Reese and Payton Ward. Thursday, July 29, 2010. A little bit of summer random-ness. I love being the neighborhood hang out for the kiddos:) I think I am officially known as the otter-pop lady! I couldn't resist taking a pic while Sarah and the boys were over and Ellie too. Come on over anytime neighbors! Totally cracked us up. Hope you are all having a great summer:). Subscribe to: Post Comments (Atom). A day in the life of an Eyford. Baby Girl is 7 months old! Al, Jenn and Baby Owen.

jasonandtishelleward.blogspot.com

The Ward's...: Home Again

http://jasonandtishelleward.blogspot.com/2011/02/home-again.html

Jason, Tishelle, Reese and Payton Ward. Sunday, February 27, 2011. This time of year has come again.I am an official "Stay at home mom". It is funny how much this affects me. I look forward to being with my family, and yet I look forward to working. Did I mention the paycheck that I lack the rest of the year? I tell ya, "What to do? Maybe I will start with a little sewing! Welcome home, Ms Tishelle! February 28, 2011 at 12:28 AM. Subscribe to: Post Comments (Atom). C jane enjoy it. Al, Jenn and Baby Owen.

heavenlyyours.blogspot.com

Little Miss Hannah:Heavenly yours

http://heavenlyyours.blogspot.com/2009/06/little-miss-hannah.html

And then there was blogspot. Enter Blog Address (URL):. This blog address is available. Good Grace What a nice Blogname! Please do visit this girl’s website. She is suffering a rare disease called “Gaucher Disease” a Kind of neurological sickness where in you will start to lose body functions at progression. From losing eye focus to the ability to lose control of breathing. You can also watch an embedded video to understand more of the disease. Feed You can leave a response. Iran: Where is their Vote?

fromhuskiestohusbands.blogspot.com

From Huskies to Husbands: February 2010

http://fromhuskiestohusbands.blogspot.com/2010_02_01_archive.html

Follow me on Twitter. The Cast of Characters! Rebel and Suzy Speak! RIP Rebel Jedi Knight. Reviews of Anything and Everything. Casio Exilim Camera Giveaway. Pork with Mustard and Wild Mushroom Cream Sauce - Gluten and Cow's Milk Dairy Free. 30 Something And Searching. Confessions of a Psychotic Housewife. Daisy the Curly Cat. Duck and Wheel with String. From Ohio with Love. Just Bloggled: When Life Gets a Little Baffling. Karen and Gerard Zemek. Laane on the World. Me and Craig . The Maaaaa of Pricilla.

visionsoflagean.blogspot.com

Visions of Life: A Journey Towards Health and Wealth: October 2009

http://visionsoflagean.blogspot.com/2009_10_01_archive.html

View my complete profile. Teen Peer Pressure: Raising a Peer Pressure-Proof . 4 Weight-Loss Rules to Break. 15 Cancer Symptoms Women Ignore. Friday, October 23, 2009. Teen Peer Pressure: Raising a Peer Pressure-Proof Child. Learn what kinds of peer pressure teens face, who’s most vulnerable, and how to help your son or daughter resist. Remember when your teenager took her first steps as a toddler? Teen Peer Pressure: What's Being Pushed? Here are some of the survey's findings. By the time adolescents are...

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Little Miss Hamilton x 2. Saturday, September 3, 2011. Football (and baton) edition. Football with Ellie was not so fun last year- -but times have changed! At the last minute today I decided to take Ellie to the State game, my parents had an extra ticket and I thought it would be a good opportunity for Ellie to see Zoe twirl. She loved it. She cheered when everyone else cheered, kept a watchful eye on the wolf mascots (all mascots are freaking her out right now) and loved seeing Zoe. We have had to major...

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The Grand mel Adventure

The Grand mel Adventure. My home is Colorado.and her proud mountains tall.". Tuesday, April 9, 2013. Virtually, not physically, don't worry! Check out my new page at www.thestokedlife.com. Links to this post. Monday, January 28, 2013. Learning to Walk Again. Instead of just gathering my "worst things" I've decided to view them as challenges and my anticipated reward having overcome the challenge. 1 The Complainers/Excuse makers. Result: A renewed sense of passion and drive. Having the opportunity to see ...

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Little Miss Shamr0ck #. Un bl0g p0ur t0us les m0ments passes en Irlande. Et p0ur t0us les gens qu on a renc0ntres la bas. N0s plus belle ph0ot0s. N0s plus beau s0uvenirs. 11/07/2007 at 8:20 AM. 20/02/2008 at 12:47 PM. Subscribe to my blog! 3 eme artcile sur. AUSSI DE KILKENNY mdrr. EME SI ON SE VOIT TRES PEU. VEC QUELQUES PASSAGES SUR MSN. EMPECHE QUE VOUS ME MANQUEZ. UOIQU'IL EN SOIT.[/. N JOUR PEUTETRE ON SE REVERRA. T ENCORE UNE FOIS. JE OUS EST FAITE EN STAR CAR JE M'ENNUIYAIS]. Beaucoup de temps c'e...

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littlemisshannah.com

Little Miss Hannah - Fight against Neuronopathic Gaucher's Disease type 2/3 — Our Fight against Gaucher's Disease type 2 or 3

Our Fight against Gaucher's Disease type 2 or 3. If you have a child with GD23. GD23 Research & News. So Long, Farewell…. 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 am content with this “new me.” Happy? That weighs on me. I am forever a “grieving mother” but I don’t wear this on the outside the large majority of the time. People do...However, I want the...

littlemisshannah.org

Little Miss Hannah Foundation — Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

Skip to primary navigation. Little Miss Hannah Foundation. Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy. Medical-Therapy Equipment Assistance Program. Childhood Rare Disease Advocacy. Family Support and Activities. One Child at a Time. One Child at a Time. Our Mission: Enhance the quality of life for children diagnosed with rare and complex medical conditions in Southern Nevada. Little Miss Hannah Foundation. We are ...

littlemisshannah.wordpress.com

Little Miss Hannah | In search of a diagnosis for our little girl…

In search of a diagnosis for our little girl…. December 30, 2008 by Overloaded Mama. If you haven’t already updated your RSS feeders and email notifications for the new blog location, just click or fill out below. Thanks so much 🙂. Subscribe to Little Miss Hannah by Email. Posted in Living Life. Hannah’s blog has a new home. December 27, 2008 by Overloaded Mama. You can find future updates at http:/ www.littlemisshannah.com. If you have us on your blogroll or links list, please update our information.

littlemisshannie.blogspot.com

The Key to Me

Monday, February 16, 2015. I need to write. I just don't know where. Sunday, June 2, 2013. The End’s Not Near, It’s Here (Again). I’ve been reflecting on this little ole blog. I haven’t written here in ages. Much has changed in my life since I started writing here so, so long ago. When I first started blogging, I was just a wee one in high school and now? Now I’m on the cusp of my final semester of classes for my undergraduate degree. Where did the time go? Thank you for the last 4 years. Thank you for b...

littlemisshappy--47.skyrock.com

LittleMissHappy--47's blog - Blog de LittleMissHappy--47 - Skyrock.com

Blog de LittleMissHappy- 47. 26/12/2010 at 6:23 AM. 26/12/2010 at 6:38 AM. Subscribe to my blog! Me voicis en quelque lignes :. Nom: Sa te regarde - '. Age : . - '. Être avec mes ami(e)s. Être avec ma meilleure amie. Faire chier les gens. Faire de la Gymnastique (ma passion). Jalouse de temps en temps. Célibataire mes pas intéréssait. Si tu me connais déjas (en réalité) dit si tu pense que sais vrai. The author of this blog only accepts comments from friends. You haven't logged in. Post to my blog.

littlemisshappy.com

Little Miss Happy | Little Miss Happy

Quotes & Images. Taking Control of the Future,. Savoring Every Moment Along the Way. Finding Happiness in Everyday Miracles. Making Only Enough Room for the Important Stuff. Adorable Elderly Couple Plays the Piano. Always Look for the Good Things…. Do What Makes You Happy. Can’t Wait for Festival Season! Finding Happiness in Everyday Miracles. Making Only Enough Room for the Important Stuff. Adorable Elderly Couple Plays the Piano. I love cute old people! Always Look for the Good Things…. Just got home f...