The disease itself is devastating and not curable at this time. When we got our diagnosis, I felt as though my world had crashed in on me. I wanted to find something, anything that could help him, and did tons of reading. Everywhere I looked, all I could find were the words, Terminal, Fatal, and Untreatable. This drove me out of my mind and I was determined to find something to make his life just a little better.
One thing we want to stress is that the things we used for Conner, may not help or give the results it did for him to every child. We are just saying that it made his life easier and he was overall "healthier". But again it did not cure him and he did not survive the disease. Though I do want to say, Conner only had pneumonia once, and he did not ever stop eating, and he was 25 pounds when he passed away. Most children that suffer from Sandhoff Disease have pneumonia over and over, for some this turns to be the reason of their passing. Others come to a point that they can no longer digest their tube feedings, they vomit everything back up and loose so much weight, their bodies are trying to naturally shut down and feeding should not be forced when this time comes. An average weight for those that have passed due to feeding issues is between 16-19 pounds. The cause of Conners passing was congestive heart failure, his heart just stopped and his spirit simply flew away. He had swelling on and off for about 3 weeks, and then constant the week before. But he was not sick and was not suffering, he fought until he could fight no more and it was peaceful. One last thing I want to say before we get into the information pages is that you will get through this, and we are here to answer any questions or help in anyway we can. Things are hard and difficult, and sometimes extremely overwhelming, and ofcourse unfair - but somehow we all get through the hard times and learn to live everyday to its fullest. I will miss my son forever and think of him always. But I know that without a doubt he is in heaven, laughing and playing. He is safe and not sick anymore, he is with other children and they are all angels. Someday we will all meet again, till then his memory will never be forgotten.
