Go Higher


One gene

One cell

One little mishap

One gone wrong

None goes well

 

The disease

The struggle

Come together

Make their lives

For the better

 

A very sticky situation

Has been placed

on our own selves

This is the rare redirection

That destroys our sibling’s health

 

Their loss

Make it good

Make it whatever they dream

It’s not yours

But it will help them

Do it for them

 

The end may be approaching

For them and your soul

But they go towards the north

They’ll go higher up

They’ll be the ones to make others look up.


Father’s Day

The following blog was published by The B.L.A.I.R. Connection’s partner, Patient Worthy. Rebecca is big sister to 10-year-old Amanda who suffers from a rare form of epilepsy. The family travels far from home with assistance from Miracle Flights, the nation’s leading nonprofit flight organization, to reach the specialized care she… Read More

Image for My Sister’s Funeral

My Sister’s Funeral

I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. Read More

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