Posted by: tinyeye | June 30, 2010

Dandy-Walker Syndrome: A Mother’s Story

“Most people who succeed in the face of seemingly impossible conditions are people who simply don’t know how to quit”

~ Robert H. Schuller

Hi Everyone,

Feeling isolated, uninformed, and helpless in regards to helping your own child is a parent’s agony.   My colleague and good friend, Jenn, experienced these feelings first hand when her precious daughter was born with Dandy-Walker Syndrome.   Jenn diligently sought support groups and knowledge; however, she was disappointed to learn that very little was available at that time  for her and her family.   Fortunately she had access to physiotherapists, occupational therapists, and speech-language pathologists.    Jenn worked tirelessly to give her daughter, Ashley, all the support and experiences she possibly could.   Today, Ashley is a beautiful, spectacular six year old who grows a smile on everyone she meets.    Jenn knows the value of early intervention, continued support during the school years, and consistent home practice programming.    She often mentions that she wishes she could have had someone to give her hope and support in the beginning of Ashley’s journey – someone who had made it to that other side of the rainbow where you exhale (at least a little bit) knowing dreams can come true.   Although a parent’s worry is never over, Jenn feels blessed that Ashley has achieved so much and continues to have so much potential.  She wanted to share her story with other parents with the wish that you will find some hope and support on your journey.

Jenn’s story:

“We knew while I was pregnant that Ashley had some complications.  She was diagnosed with a rare condition called Dandy-Walker Syndrome.  It was a tough few years.  We were told that she would likely not walk on her own without assistance.  She didn’t say a word until she was 2 ½ and the doctors feared that her quality of life would be severely affected.  Needless to say, Ashley had other plans and had a special guardian angel watching over her.  She is 6 years old now and can walk and talk.  She is an energetic little girl and sometimes I see her struggle and want to help.  When this happens, she will turn to me and say ‘Mommy, I can do it all by myself.”

One of the most of important lessons I have learned is you never know how your special child will turn out but love them and nurture them and they will surprise you.

I have learned more in these 6 years then my whole lifetime.  I learned to slow down and enjoy the small accomplishments.  She didn’t say her first word until she was two and half but we celebrated every little milestone along the way.  With all the ups and downs with her condition she has never lost her smile.  She is an inspiration to me and to everyone that meets along her journey but most important she is our little miracle!”

Ashley, you are a precious gift to us sent from God above.
He placed you in our loving arms and
blessed us with your love.
May you always walk with Jesus –
live your faith in all that you do.
Treasuring God’s love
the way we treasure the priceless gift of you.
~Love Mom and Dad

For more information on Dandy-Walker Syndrome, follow this link:

http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm

If you would like to speak with a speech-language pathologist or connect with Jenn, follow this link:

http://www.tinyeye.com/Find-a-Speech-Language-Pathologist/school-districts-contact-tinyeye.php


Responses

  1. very happy to hear of Ashleys, acompishments,my son is now 19 ,and he has dandy walker syndrome ,but unfortunately he cant walk,and he does have his issues ,and like your daughter, he is very out going and is loved by everyone he meets ,his personality is something special , he is always happy,he graduated high school this year and made us all so proud,very special children ,


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