Monday, April 23, 2012

Family.

When I was very suddenly thrown into a position of discovering my sweet baby boy may, at best, struggle with health issues for his lifetime, I felt so isolated.  I yearned for a connection with anyone who understood; anyone who could help provide any insight that might ease my aching heart and restore some balance within my logical brain.
Then, as I have mentioned before, I discovered the Chromosome 18 Registry and Research Society, and I found my home.
Deak is a rare little dude; even within the Chromosome 18 changes, his Ring 18 is quite rare and quite un-researched.  Thanks to facebook and attending a few conferences, we have been able to "meet" a handful of family members traveling this rocky Ring 18 road with us.  I promised myself, during my dark days, that when I was able to, I would do my best to support new families of our precious Ring 18 babies. I needed to know that the pain I was enduring would not be in vain.  I needed to turn my pain into power.

Then came Miss Jenna.


She was born with Ring 18 a couple of years after Deak and stole my heart.
Her parents are pretty amazing too (even if they are Patriot's fans).
We've been able to develop a real relationship with this family, while living across the country from each other.
We are family.

Please consider joining our run and supporting my Deak and his friends. 
There is only 3 weeks left...click here to register right now.

Really, how can you resist this face? :)

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