Dear Sturge Weber Syndrome

For Lola and others like her…

Dear Sturge-Weber Syndrome:

When you came into our life
We prayed that you would go
Sometimes what we want
Isn’t what we get, this I know
We don’t like that you are here
You make everyone cry
You bring sadness and fear
We wish we could bid you good bye!
Now with each dawning day
As I kneel on my knees
I pray for a cure
For your orphan disease
The children affected
Don’t deserve what you’ve done
The seizures, medications, and disfigurements on some
I pray for the doctors, their research and dedication for sure
And the children and families for the things they endure
You ripped at our hearts
Oh the things that you do
Please listen Sturge-Weber
I’m talking to you
No more will you take the things I hold dear
Like laughter and love and my hopes this is clear
Sturge-Weber Syndrome as unwelcome as you may be
You’ve changed me forever, for the better, this I see
The appreciation I feel from this life changing event
Like the kindness of strangers from donations that are sent
When I look at sweet Lola with her beautiful smile
The message is clear and the pain is worthwhile
She’s an angel, a gift, sent from heaven above
Full of laughter, excitement, and an undeniable love
I promise you now and this you can be sure
I will not stop fighting until there’s a cure

~Jeanette Ribak a.k.a. GiGi

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