PosthumousExecptional People Of The Northshore… Bailey

Posthumous Exceptional People of the Northshore :: Bailey

Post Series: Exceptional People of the Northshore
  • 1.Posthumous Exceptional People of the Northshore :: Bailey

Posthumous: Exceptional People of the Northshore

Some individuals come into this world with their soul’s purpose set forth well before they take their first breath. Some call them angel’s while others say they are old souls, pure in spirit and full of love and wonder. One such individual came into this world in 1993 creating a ripple effect that touched those who knew her and those who would never be aware of the name of the systems change that would empower their voice.

Bailey Caroline Durham was a gentle soul stuck in a body of a 6-month child for over 21 years, but whose story would reach far beyond the boundaries of her life, and others. Bailey’s struggles were medically involved, and part of the miracle of her life was her desire that no family should have to experience the battles that she and her father would fight through. Often profound and messy, she and her father would commonly be found fighting through the sleepless nights, between the feeding tubes, and beyond the drives to the ER to make a straightforward statement:

Your voice matters!

Though Bailey communicated without speaking and smiled through the countless uncontrolled seizures, she empowered her father to speak on her behalf and speak with legislators while administering medications through the little tube in her stomach. Though she was unable to sit up on her own, she empowered others to stand for themselves and the loved ones under their care. Unable to drive a car, she created a driving force for the developmental disabilities community in fighting against the injustice of line-item vetoes at the state administrative level.

Many people will never know the full spectrum of the effect Bailey Caroline Durham had on their lives, and she is okay with that. As she has now passed on and no longer physically here, her legacy and spirit continues to fuel fires and affect systems change for families throughout the state of Louisiana.

A few of the ripple affections of Bailey’s life include:

Act 507 (AKA Bailey’s Law): Empowering parents and caregivers to have the voice in the training of those caring for their loved ones under Self-Direction.

OTVLA: – Override the Veto Louisiana: This became the fastest growing, largest grassroots organization to cause a near over-ride veto session in the Legislature, and would effectively make the phrases “NOW Waiver” and “Children’s Choice Waiver,” part of the conversation in the Louisiana Legislature.

Children’s Special Health Centers: Bailey’s story empowered her father to fight against budget cuts to the only real single-source medical care system that worked within the state for families dealing with developmental disabilities.

Bailey’s legacy continues as does her desire for families and self-advocates throughout Louisiana to stand and fight for their medical, educational, employment, and mental health rights, all punctuated with the call-to-action:
Be a Voice!

Bailey, 21 years old
Pontocerebellar Hypoplasia
East Feliciana Parish
Exceptional People of the Northshore

 

This Post Has One Comment
  1. The Love And The Bond Of Child Like Bailey And Her Father Jason Denning Durham Is UNBEARABLE That NO ONE HAS EVER SEEN COMING But Other Then.

    That I HAVE MOST DEFINITELY HEARD ALOT, ALOT AND ALOT ABOUT HOW WONDERFUL, AMAZING,

    TALENTED AND GIFTED Bailey Was To Jason’s WHOLE ENTIRE FAMILY!

    AND Most ESPECIALLY TO JASON HIM SELF THE MOST ESPECIALLY That One Can NEVER TELL. Love YOUR FAMILY CLOSE FRIEND FOREVER, Anne Meacham

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