We Are R.A.R.E. Inc. Nonprofit Overview and Reviews on GreatNonprofits Volunteer. Donate. Review.

Denver Nuggets and We Are R.A.R.E.

The Denver Nuggets have partnered with We Are R.A.R.E. for a fundraiser. Start spreading the word and join us at the Pepsi Center. The Denver Nuggets will be battling the Houston Rockets. This is NOT a game to MISS! Tickets are on sale through the Denver Nuggets sponsored fundraising website http://www.nuggetstix.com/wearerare. Any tickets purchased at the box office or through any other means does not count towards our fundraising efforts. Help us reach our goal to sell as many tickets as possible before March 7th.

Share with your friends, family and co-workers! Click here to download a flyer to pass around Continue reading

October’s RARE Super Hero Notification

Every month we will have a drawing to select one person to be our RARE Super Hero. The winner of the drawing will get a special mask made for them from Crystal’s Creations.

Go to our RARE Super Hero’s page to submit your entry!

A Preview of Faith Anne’s Story

We go through so many difficult times as a special needs parent, especially with a disorder no one understands. There is nothing more amazing than knowing a child with special needs, they teach you how to appreciate the things we all stop paying attention to s a child; like the shape of a cloud, or the sound of the birds. We should all be as lucky as Faith to see the world the way is meant to be seen; with love and an open heart.

— Faith Anne

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

A Preview of Rafe’s Story

I quickly read the papers and my whole world fell apart in an instant. I learned Rafe was missing a large portion of the right side of his brain. I never felt so alone in my life than at that moment. I couldn’t read anymore, I could only cry. I cried for my son who was struggling to live, I cried for what I had just lost, and most of all I cried for my husband and son who had no idea what was coming.

— Rafe

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

A Preview of Phillip Mims

I began realizing the seizures changed me. My balance was badly thrown off, I had vertigo, and I spaced out to where I could see people talking, but I just stared with no emotion. I smiled on the outside, but felt raged madness on the inside. I leveled out somewhat, but still had waves of those effects for five years.

— Phillip Mims

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

A Preview of Noah Dennis’ Story

The door swung open, and the words I will never forget came spewing from his mouth like he was so detached from me that my feelings did not matter. ” your child has a rare disorder called Schizencephaly. He is missing part of his brain, and we are sending you to counseling now.” The door shut and I watched my husband drop his head. That was the first time I ever saw him cry.

— Noah

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

A Preview of Jaylon’s Story

As Jaylon started to get older things became more noticable. Like how she never learned the suck-swallow-breathe coordination , which was crucial to her being able to eat on her own. She never attempted to crawl and would scream if you put her on her bellyShe was not receiving adequate nutrition on her own, so I decided to move forward with the placement of a feeding tube.

— Jaylon

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

A Preview of Carroll Sequin’s Story

The doctor told me I had Schizencephaly. He explained the gist of the disorder to me and said I needed to see a neurologist to get further details. I left there in tears and feeling very alone. I was unsure what to think, but at least I finally had some answers to my 20 year long journey.

— Carroll Sequin

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)

Alabama Professionals

John T. KillianName: Dr. John T. Killian, M.D.

Specialty: Orthopedic Surgery

Affiliated Hospitals: University of Alabama Medical Center

Websitehttp://www.orthopedicsforkids.com/

Recommended By: Katie Ellis

 

 

Charles R. LawName: Dr. Charles R. Law, M.D.

Specialty: Pediatric Rehabilitation

Affiliated Hospitals: United Cerebral Palsy of Greater Birmingham Inc

Websitehttp://www.ucpbham.com/

Recommended By: Katie Ellis

 

 

Joseph M SherrillName: Dr. Joseph M Sherrill, M.D.

Specialty: Orthopaedic Surgeon

Affiliated Hospitals: Orthopaedic Sports Medicine Clinic of Alabama, PC

Websitehttp://www.osmcoa.com/

Recommended By: Katie Ellis

 

 

A Preview of Yanni’s Story

I remember the first day I received Yanni’s diagnosis, And I am so glad the doctor was wrong and that I heard those words about resilience from our neurologist. The brain is resilient. And our lives are definitely resilient if we remember to take it the only way we really can; one day at a time.

— Yanni

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)
 

A Preview of Ada-Lily’s Story

Ada and I tend to be in our little world most of the time. In this world of ours, Ada-Lily is a typical child. I do not pretend that she isn’t disabled, the way she is has become my normal. It isn’t until we are around other people that I am brought back to reality.

— Ada-Lily

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)
 

A Preview of Gage Phillips’ Story

We have watched our child in pain, Knowing that we can’t do anything to help him. We have watched him slowly develop, and be passed up in many ways by his younger brother. Gage has been through more in his little life than most people go through in an entire lifetime, His journey will be a hard one and he will have to overcome many obstacles, but he has already shown our family and many others that miracles do happen. And just because the doctors say so does not mean it will be that way.

— Gage Phillips

Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)
 

Florida Professionals

december surgery with dr birnbaumName: Dr. Mark Birnbaum, MD

Specialty: Pediatric Orthopedics and Surgery

Affiliate hospitals: Center for Orthopedics at Arnold Palmer Hospital

Website: http://www.orlandohealthdocs.com/

Recommended By: Tricia Dennis

 

 

Prashant M. DesaiName: Dr. Prashant M. Desai, MD

Specialty: Pediatric Neurology, Pediatrics

Affiliated Hospitals: Florida Hospital

Website: https://www.floridahospital.com/

Recommended By: Tricia Dennis

 

 

avatar-profile-pictureName: Dr. Yolanta Sadlowski, MD

Specialty: Neurology

Affiliate hospitals: All Childrens Hospitals

Website: NA

Recommended By: Kathryn Baatz

 

 

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