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Hailey's Wish

Hailey was born a beautiful, healthy baby on November 25, 2004. She was a perfect newborn and melted all of our hearts immediately. We were so thrilled and proud to be parents...

Haileys Wish

A Message From Hailey's Grandma - 2011

In July of 2006, I wrote "Losing Hailey". It was my version of what it was like to watch this beloved and beautiful baby girl fight for her life not knowing why until shortly before she passed away.

Alper's Syndrome? All we knew was that it was a fatal mitochondrial disease. Information was almost non-existent.

In a quest to ease our heartbreak and gain some knowledge and understanding of these insidious diseases, Hailey's Wish was founded in the fall of 2006. We no longer had Hailey, but we could certainly honor her memory. Educating and raising awareness became a priority along with raising money for research.

We have been blessed to meet doctors and researchers who want desperately to find answers. In order to do so, they need our help. Having been contacted by families around the world we know what research discoveries could mean for them.

Mitochondrial diseases are almost as common as childhood cancers. Since founding Hailey's Wish, information about Alper's Syndrome along with other mitochondrial diseases has increased significantly. Educational Grand Rounds at CHOC (Children's Hospital of Orange County in California) sponsored by Hailey's Wish and presented by mitochodrial disease specialists chosen by Jose Abdenur M.D. of CHOC are an important component of what we do along with supporting the cutting edge research of Dr. Robert Naviaux M.D. PhD at the University of California San Diego.

An impact has been made and along with your support we will continue to do all that we can until the day we are all able to rejoice with the news of a cure!

Thursday
Aug182011

Losing Hailey

hailey

You’re in the hospital once more
We still don’t know what’s wrong
Prayers go out across this land
To keep you safe and strong,

They say your illness is a mystery
And as we look at your sweet face
Each one of us who loves you
Would gladly take your place

We adore you and we’re here with you
Each night and every day
You’ll never be alone sweet girl
We’ll be here come what may

As the days turn into weeks
We hold on to the hope
That you’ll grow up and live your dreams
It helps us all to cope

Your parent’s hearts are aching
Their eyes shine bright with tears
You haven’t smiled for quite some time
Enhancing all our fears

When at last we have an answer
The doctors sad and sure
This is a rare and cruel disease
There is no hope or cure

This all seems so surreal to us
You’ll leave us soon they say
We cry and kiss you tenderly
And with the priest we pray

Dear God, please care for this sweet child
When she departs this earth
She’s brought pure joy and sunshine
Since the moment of her birth

Then in your Daddy’s loving arms
Your dear Mommy at your side
You were released to heaven
Now with the angels you’ll abide

We left the hospital that night
At the culmination of our fears
It was the walk of broken hearts
Each one of us in tears

For you the time had come sweet girl
Your perfect spirit free to soar
For us the grieving had begun
We will miss you evermore.

Grandma
July 6, 2006