#RAREis (a photo essay) 

Rare Disease is… 

A port implanted in your chest for easier blood access. 


Rare Disease is…

Having to wear your food on your back so that you meet your nutrition goals for the day. 



Rare Disease is…

Knowing the hospital clowns by name. 

Rare Disease is…

Watching the sun go down in a city far away from home. 




Rare Disease is…

Life-flights by helicopter to major hospitals. 


Or Daddy following the ambulance. 

Rare Disease is…

Lots of tests and appointments. And missed days of school. 



Rare Disease is…

Quite the view. In many ways. 

Rare Disease is…

Wheelchair rides 

Rare Disease is…

Making new friends 

Rare Disease is…

Recovering from anesthesia and other yucky things. 


Rare Disease is…

Hospital “treats” 


Rare Disease is…

Three hour trips home from the Children’s Hospital 

Rare Disease is…

Your body never feeling like your own because people are always touching you. 


Rare Disease is…

Being confined to a hospital bed instead of tucked in at home. 


Rare Disease is…

Stealing your moms pull-out bed the moment you get permission because you need a change of scenery ASAP. 

Rare Disease is…

Missing Daddy because someone has to work and the bills don’t stop coming.  (Thank goodness for Facetime!) And Big Brothers driving from college to support little brothers when possible. 



Rare Disease is…

Never having a “normal” childhood since the day this photo was taken…


…Rare Disease has asked so much from you, Corrigan.  And these photos are just the last few years of your nine on Earth. 

#RAREis #notfair

We love you, brave boy. 💚

💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚
7k diseases impacting 350m people worldwide. Share your Rare by visiting RAREis

4 thoughts on “#RAREis (a photo essay) 

  1. Thank you so much for sharing your pictures. My daughter and I have a UCD. It is OTC. She has been hospitalized 52 times. Your pictures remind me of her life. So hard but so precious.
    Thank you again for sharing.
    God Bless❤️
    Cyrene

    Like

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