I just wanted to write to thank CHARGE Syndrome Canada for the last edition of the newsletter.  Our extended family all really enjoyed reading it.   For other families with young children, I would like to tell them not to loose hope.  Our son with CHARGE syndrome is doing very well. He is 9 years old and it has been a very long road.  Since he was born, he had two operations on his heart; choanal atresia repair surgery 4 times; they put in a g-tube for feeding, and later had surgery for his reflux when a fundo was put in.  This seemed to really help him gain weight.   We were able to start oral feeding at age 5, after he passed his swallow test.  "Meals" however sometimes took 2 hours! 

We were lucky in that we had many supports early on.  This included therapy for vision stimulation, early intervention with sign language, physiotherapy, occupational therapy, sensory integration work, horse back riding therapy...the list is endless and we were exhausted! We also had family and friends helping since the beginning. I don't know how families could cope without extra support.   FINALLY we see so much progress in that our son seems to have caught up with his peers in school, and we can say he has his first real friends.

I can't say enough about the financial strain we have endured.  We went through so much financially with hospital stays, paying for therapy, equipment, and all that he needs. Thank you so much for having this charitable organization, where we can now help raise money, and look to the future for our children filled with all kinds of hopes and expectations.

A thankful family!