As we come to the end of January 2018 I have been looking back on the last couple of years and reflecting. When we received our son's diagnosis we felt just as isolated if not more so as we now knew what it was but couldn't find any information on it. The medical professionals could tell us what it was in medical terminology but that meant nothing to us. So, the isolation continued, until one day. I regularly searched the internet looking for anything, anything at all on Champ1 and I finally found it! A glimmer of hope at last.
For the first day in the seven years of isolation we finally knew we were not alone.
At the start of our new journey there were four other families (in America, we live in Scotland!) with a child with the same diagnosis. Words can't explain the feeling of finding these people and sharing our stories of our champs. We are continuing to grow as a community and have welcomed many new families over the last two years. I look forward to us welcoming many more!
If you are just starting out on your new champ journey please know that you are not alone. I only wish we had this group at the start of ours! Our community grows together and no matter how far apart in the world we might be, we are there as support for one another.