And the New Year is here!

And the New Year is here!  2017... it is exciting to start a new year but for so many Batten Families it is hard to be optimistic.  Batten disease causes once normal children to regress.  Garrett is now 6 years old but is not anything like a six year old boy.  Garrett was once a little boy who looked out the window and yelled "crane!" whenever he saw construction.  He would pick out the airplanes in the sky and run to the window for trash trucks!  He is now blind, seeing nothing.  Garrett would run and wrestle with Daddy and now he can't even get up or stand on his own.  Garrett was always a good eater shoving as much food in his mouth as he could!  He especially loved cookies.  Now we have to feed him.  He can only have bite size, soft foods.  Garrett can barely talk anymore, saying only 3 different words.  We no longer get to hear him call us Mommy or Daddy.  He rarely sleeps through the night.  Garrett worked hard at being potty trained, now he is back in diapers.  Garrett now suffers from cluster seizures, vomiting after each episode. We look back at his regression and cry but the daily struggles are just as painful.  THIS DISEASE IS HORRIFIC!

As Garrett continues to regress, we hang onto him!  He is truly a little boy, always laughing at bathroom talk and bodily functions.  He still has the best giggle ever!  He likes to snuggle with Daddy.  He enjoys walking in his gait trainer.  And he still let's us kiss him constantly!

Garrett the Grand - Batten Fighter (non-profit organization) continues to fight for rare disease.  With your support we fund researchers, promote advocacy and educate about rare disease.  Please continue to follow us and have fun at our fundraisers!