The Alle Shea Project (@allesheaproject) 's Twitter Profile
The Alle Shea Project

@allesheaproject

Advocate for Osteogenesis Imperfecta (OI) aka brittle bones in memory of my daughter Alle Shea that passed away from OI after 5 weeks of life.

ID: 1397916259

linkhttp://www.allesheaproject.org calendar_today02-05-2013 18:43:21

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The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Today we are having our annual fundraiser to celebrate Alle's birthday and to help raise awarenes of the rare brittle bone disease Osteogenesis Imperfecta. Come to Uno Pizzeria & Grill in Webster to help...click link for more info allesheaproject.org/Uno-Dough-Rai-…

Today we are having our annual fundraiser to celebrate Alle's birthday and to help raise awarenes of the rare brittle bone disease Osteogenesis Imperfecta.  Come to <a href="/UnoChicagoGrill/">Uno Pizzeria & Grill</a>  in Webster to help...click link for more info  allesheaproject.org/Uno-Dough-Rai-…
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

It was another successful fundraiser, hard to believe it's been 14 years since Alle left us after a 5-week battle against Osteogenesis Imperfecta the rarer brittle bone disease. We have never stopped keeping her fight alive and helping others with the same disease. Pulte

The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Tomorrow at 8pm I will be on Inspirational Talk with Toneal! I will tell Alle's story and how we are doing work in her name, I will give more details soon!!!

Tomorrow at 8pm I will be on Inspirational Talk with Toneal! I will tell Alle's story and how we are doing work in her name, I will give more details soon!!!
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

National OI Awareness Week begins on Saturday! City of Rochester NY proclaimed May 6 - 13 as OI Awareness Week in Rochester For more information on how you can raise awareness and support the OIF this week, visit oif.org/awarenessweek. #OIawarenessWeek #UnbreakableSpirit

National OI Awareness Week begins on Saturday! <a href="/CityRochesterNY/">City of Rochester NY</a> proclaimed May 6 - 13 as OI Awareness Week in Rochester
For more information on how you can raise awareness and support the OIF this week, visit oif.org/awarenessweek. #OIawarenessWeek #UnbreakableSpirit
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

I will try to do my best to give information about Osteogenesis Imperfecta for OI awareness week, first up Rodding sugery. many children may need this surgery children Who have curved bones, repeatedly break a long bone many at a very young age.

The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Day 2 of OI Awareness Week News 8 WROC Extraordinary People on the Snuggle Buddy care packages we send to kis with OI all over the world! Since this interview, we have sent 199 care packages to 41 states and 10 countries. youtube.com/watch?v=79JXL4…

The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

I share Alle's xrays for the first time in 14 years.  I do this for OI Awareness Week, when I first saw them my heart just broke, my baby was so broken.  This is OI the rare brittle bone disease.... At birth, Alle had broken ribs, arm, wrist, legs, and her skull was fractured

I share Alle's xrays for the first time in 14 years.  I do this for OI Awareness Week, when I first saw them my heart just broke, my baby was so broken.  This is OI the rare brittle bone disease.... At birth, Alle had broken ribs, arm, wrist, legs, and her skull was fractured
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

6 years ago I was one of the grand prize winners of Kwik Fill Sounds of Christmas contest, I won over $2,000 worth of musical instruments. I decided to use them as raffle items to raise money for the OI Foundation!!! #oiawerness #brittlebones #OIAwarenessWeek #MyUnbreakableStory

The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Not looking forward to tomorrow. May 21, 2009, we made the heartbreaking decision to take Alle Shea off life support. It was also the first and last time we held Alle without cushions and padding between us. she opened her eyes one last time and saw her proud parents. we miss u

The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Dear Alle, May 21, 2009, at 11:07 am on this bench at Golisano Children's Hospital we held you as you went to heaven, please know we did all we could. A part of us died with you that day. I can still feel you in my arm, I am proud to call you my daughter, we all love you!

Dear Alle,
May 21, 2009, at 11:07 am on this bench at Golisano Children's Hospital we held you as you went to heaven, please know we did all we could. A part of us died with you that day. I can still feel you in my arm, I am proud to call you my daughter, we all love you!
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

Almost 1yr old Ella with her sister's lilac bush donated by the wonderful Golisano Children's Hospital NICU nurses and now 12 1/2yr old Ella with her sister's Butterfly at Grace’s Garden located at the Golisano.

Almost 1yr old Ella with her sister's lilac bush donated by the wonderful Golisano Children's Hospital  NICU nurses and now 12 1/2yr old Ella with her sister's Butterfly at Grace’s Garden located at the Golisano.
The Alle Shea Project (@allesheaproject) 's Twitter Profile Photo

My Christmas wish is for my followers to share this video to help raise awareness of the rarer brittle bone disease Osteogenesis Imperfecta! Merry Christmas!!! youtu.be/BxRC-hk3YhI?si…