Blink of an Eye: Merry Christmas

Tuesday, December 25, 2012

Merry Christmas

Love,

The Jacksons

1 comment:

Kyle AnneDecember 25, 2012 at 11:21 PM
Dear Jackson Family,
Kyle Anne Grendys here, the 75th documented case of Fraser syndrome (At least thats what they tell me.) I just wanted to wish you all a very Merry Christmas from my family to yours. I check back here from time to time and always have the biggest smile on my face while I read up on how little Noah is doing. Thank you for that.

With love,
Kyle Anne
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The Story

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden eye”, a narrow trachea (which required him to have a tracheotomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces). Our family is on an amazing journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. We are taking each day (or each moment) as it comes and relying on each other, our friends and family, and our God for strength. We have a long road ahead of us filled with several more surgeries, lots of recovery, countless hours of therapy, and many trips to specialists around the state. Every day brings us challenges but they pale in comparison to the smiles and cuddles from our little man. Noah is our son, a true gift from God, and we cannot wait to see where this adventure leads.