-Climb mountains not so the world can see you, but so you can see the world-
Today Curren had his 6 month recheck with our local geneticist. This is the first time we have been back since we received Curren's HIVEP2 diagnosis. I think back to those first few weeks that were spent trying to wrap our heads around the information we received, and I quickly threw together a post describing everything I knew at that point (which was not much at all) - without a plan, but hoping to get something to stick. We were given a diagnosis that only 3 others in the world had, and none of our doctors were even familiar with the gene. I scoured every PubMed article I could find that seemed relevant, and blasted emails to dozens of doctors and researchers each weekend. I felt guilty as I mourned the loss of the child I had imagined, and tried to cope with the reality of our situation.
Today has a very different perspective. It feels like we are light years from that moment 6 months ago. We have accomplished so much in such a short period of time, and the future is looking bright. My mind is blown at these incredible advocacy milestones that have all happened in a matter of months. Curren has been medically published, we have 2 amazing community fundraisers going to support HIVEP2 children, I have found 2 other wonderful mom's of children with HIVEP2 disorder, we have an incredible research-driven doctor starting biological lab studies on HIVEP2, Curren's story was published here and here and here, but best of all Curren is healthy and happy and loved so dearly! Thank you to everyone for all the love and support. We really are climbing mountains and getting a better view (and starting to stand on our own with very minimal assistance from dad!)
Sign up for our mailing list and you'll be the first to get updates on Curren and all his adventures!
I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.