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So Long, Farewell… by Carrie Ostrea Posted in: Blog Posts in Children's Health 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 ... Read on »
This is How I Parent Hannah by Carrie Ostrea Posted in: Blog Posts in Children's Health Our 2nd Annual Little Miss Hannah’s Rainbows in the Wind Event It has been a major roller coaster of a month.   So many wonderful things happening yet all of it clou ... Read on »
Few weeks to go by Carrie Ostrea Posted in: Blog Posts in Children's Health Happier times… There are just a few weeks left until what SHOULD have been Hannah’s 5th birthday. I’m still trying to sort out how I’m feeling about this.   Obvi ... Read on »
Little Miss Hannah’s “Rainbows in the Wind” Event – July 24th! by Carrie Ostrea Posted in: Blog Posts in Children's Health Click for more details! 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…hundred ... Read on »
The “Irrational” Stage of Grief by Carrie Ostrea Posted in: Blog Posts in Children's Health This is what I found when I arrived at the cemetery today. Felt like a knife in the heart. We always hear about the 5 stages of grief .   I think they  need to add ... Read on »
Little Miss Hannah Continues to Impact our Rare Disease Community by Carrie Ostrea Posted in: Blog Posts in Children's Health Little Miss Hannah and her mom, Carrie Ostrea Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond (Reposted f ... Read on »
Little Miss Hannah Goes to Washington! by Carrie Ostrea Posted in: Blog Posts in Children's Health Senator Dean Heller meets with us and the Hempel Family It has been an absolutely crazy, wonderful, inspiring, and emotional week! I won’t go into detail about ... Read on »
Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease... by Carrie Ostrea Posted in: Blog Posts in Children's Health Written by Robert Ostrea Daddy and our Little Miss Hannah This year, I will be representing the Little Miss Hannah Foundation at the , organized by the Rare Dise ... Read on »
Scentsy Fundraiser for Little Miss Hannah Foundation by Carrie Ostrea Posted in: Blog Posts in Children's Health Marie-Luise Smith, the generous woman who donated 20 Scentsy buddies to our organization last month, is hosting a Scentsy Party for our Little Miss Hannah Foundation! Sh ... Read on »
I’ve Had a Magic Spell Cast Over Me by Carrie Ostrea Posted in: Blog Posts in Children's Health My Valentine’s gift from my hubby I was never a huge Disney fan growing up.  Disneyland was fun every once in a while, but I never really understood the “magic” of ... Read on »
Hannah’s Third Boston Marathon! by Carrie Ostrea Posted in: Blog Posts in Children's Health For the last few years, Genzyme (the company that makes Cerezyme) has had a  team run in the Boston Marathon .   Each runner pairs up with a Genzyme patient to help ... Read on »
The Nightmares Return by Carrie Ostrea Posted in: Blog Posts in Children's Health With toys in her hands and a love of music ~ 20 months old – April 2010 These past few weeks have been really hard. When Addy passed away a few weeks ago , it b ... Read on »
Which is worse… by Carrie Ostrea Posted in: Blog Posts in Children's Health I saw this post from another mom who lost her young daughter to Tay-Sachs disease, a disease in the same family as Gaucher’s Disease.  I share it because she puts into wor ... Read on »
GT23 Foundation – Gaucher’s Disease Type 2/3 by Carrie Ostrea Posted in: Blog Posts in Children's Health I am very proud to support the new  GT23 Foundation , an organization dedicated to make a REAL difference in the lives of Gaucher’s Disease Type 2/3 children. The focus ... Read on »
Please Remember… by Carrie Ostrea Posted in: Blog Posts in Children's Health A dear friend sent this to me tonight, and so much of it rang so true for me. Things Grieving Parents Wish You Would Remember… 1. I wish you would not be afraid to ... Read on »
Moment of True Happiness by Carrie Ostrea Posted in: Blog Posts in Children's Health I had a dream with Hannah in it last night.  A good dream. I’ve been waiting for her to come into my dreams, just wanting to be able to spend time with her.   All I ha ... Read on »
My grass is a bit greener tonight by Carrie Ostrea Posted in: Blog Posts in Children's Health I can’t stop thinking about those children in Connecticut tonight.   How horrified they must have been to see that “thing” come into their classroom and start shooting at ... Read on »
Vivid Memories from One Year Ago Today by Carrie Ostrea Posted in: Blog Posts in Children's Health   December 4, 2011 Hannah passed away at 10:10 pm on Sunday night, December 4th, in my arms after a weekend surrounded by all of her grandparents, aunts, uncles, ... Read on »
Remembering Thanksgiving by Carrie Ostrea Posted in: Blog Posts in Children's Health This is where we were one year ago — what I would give just to have a few more minutes with her. But what I am thankful for is that I had three years with her. It was ... Read on »
How am I going to do this? by Carrie Ostrea Posted in: Blog Posts in Children's Health Halloween 2010 – she loved picking out pieces of candy (although she never ate them – she held them like toys!) I am having the hardest time trying to psych myself u ... Read on »