Jackson

In Jackson's short life he's gone through two heart operations, four catheterizations, countless vaccinations and RSV clinics, x-rays and echocardiograms, chylothorax, chest tubes and feeding Tubes. He is the bravest little boy I have ever met, hence the name, and he amazes me on a daily basis. I'm reminded my son has a serious disease only by the medications I give him daily. I hardly notice his scars because to me, they are as much a part of him as his nose or eyes. His scars have been with him since birth, his zipper is the reason he is living and breathing; a constant reminder that my beautiful son is a survivor and a warrior of CHD.

Over the past year I've had the pleasure of meeting several other parents through TCHIN & PDHeart who have children just like him. Having a child with Congenital Heart Disease causes many parents to become experts about their children's conditions, which also makes them very special to the world. It has been an honor to communicate with them and it wouldn't have been possible without this wonderful organization. Thank you to everyone who has been a friend and who was there for us this year. I don't feel like we could have made it this far without all of your kind words and support!

Jackson just celebrated his 1st birthday and learned to walk. There was a time when I wasn't sure if I'd get to see him reach those milestones. Things change and time heals. I'm more optimistic about his future than ever before. I have so much support in the CHD community and I've learned so much that I feel that there is hope for him and for us as a family. We are currently taking things one day at a time. We're in between cardiologists and surgeries, meds and milestones and we are the happiest we've ever been. Jackson is thriving and loving his life.

Little is known about Jackson's condition in the CHD community. My focus has been to meet other parents with children who have similar conditions; specifically, Double Inlet Left Ventricle and Single Ventricle patients with or without Straddling AV Valves. Please contact me through TCHIN if you've learned that your child has any of these conditions. I'd love to have the chance to share some of the information I've learned and stories I've heard about DILV and SV survivors!