It has been a hard week for our family...the news of Canavan's is devasting. Many of our hopes and dreams feel lost. This is something I wouldn't wish on anyone. But the good news...Joey is wonderful. He is a happy, gorgeous (no...not just gorgeous, but AMAZINGLY GORGEOUS) and we love him with all of our heart.
To date, we have an initial diagnosis of Canavan's Disease. Here are some resources:
We are still pending the "final" results, confirmed by another blood and urine test. But the Dr's are 99.9% sure this what it is.
What does this mean for Joey? We don't know. What we do know is that Canavan's disease is a cerebral degenerative disease that affects the nerve ending in the brain and causes progressive brain atrophy. There is no cure, nor is there a standard course of treatment.
Right now, we are really in shock, but we want to tell all of you how much we love you. The amount of love and support we have received is amazing...I had no idea we had so many people who loved us so dearly.
thank you and we love you all,
Rachael, Ron and Joey