Confessions of People Facing Rare Disease: This Is Life


People often think having a rare disease or caring for someone who is rare means a life filled with sadness and difficulty. They often wonder “how we do it.” They sometimes feel pity for us. And these questions and emotions speak to how our society can view sickness and disability – a problem or a burden to be “fixed.”

Of course, we all would love cures and treatments for everyone facing rare disease. But there are so many of us who wouldn’t change who we are or who our kids are for the world. While we hope for a brighter future with better health, we also appreciate what we have now.

What many don’t see or don’t realize is the amount of joy, happiness and love we experience as well.

We are grateful for the small things.

Like our loved ones who stand by us through thick and thin.

couple holding hands

We live in the moment.

woman, son, and dog

And despite the pain….

woman drawing

we still try to add beauty to this world.

We know the affection of our children can make worries just melt away.

daughter kissing mother's cheek

We defy the odds.

little boy walking with walker

We are brave.

girl in tutu smiling

We know the meaning of “in sickness and health”…

couple smiling

and are grateful recipients of unconditional love.

couple getting married

We have sun-filled days.

woman smiling with dog

We add color to our lives.

young girl's head decorated with art

We dance.

girl dancing

We run.

boy near a track, doing "thumbs up"

We climb mountains.

three hikers near the mountains

And we’re thrilled when we’re part of the team.  girl in wheelchair playing with a ball

We do it all with the love and support of family and friends.

smiling family cheering near golden gate bridge

We value our time together.

family smiling on the beach

And the still, quiet moments.

mother and daughter in the lake

We don’t let being rare stop us from living a life that’s full of memories. Whether it’s going to prom —

girl dressed up for prom

or winning costume contests.

mother and son dressed up for halloween in a "bat mobile" for batten disease

We surpass expectations.

boy ready to swim

And feel immense pride for our accomplishments.

boy graduating with siblings

With all the hurdles, we definitely know how to fully appreciate the “good” days.

mother and son smiling

We’re defiant.

boy smiling

We’re dreamers, full of hope.

boy with helmet near beach

We love each other because of our differences.

brother and sister hugging

And if we’re lucky…..

two women hugging

We get the opportunity to meet others who understand.

woman wearing "the mighty" t-shirt with friend

Once we find our fellow “zebras,” we hang on tight.

three girls smiling, one holding pie

We’re advocates…

group of advocates standing together

And we’re family.

two women holding a sign "test for SCID"

Yes we’re rare, and we’re mighty.

boy with hands up smiling

We’re superheroes by day, and by night.

two brothers smiling, laying on the ground

We may have a rare disease, but it certainly doesn’t have us.

mother smiling holding two children

At the end of the day, our health challenges only bring us closer together.

mother smiling with daughter

We live life to the fullest.

Full of purpose.

Full of light.

Full of love.

Thank you to our Mighty community for these photo submissions. 


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