| WELCOME to SAKKS |
Luke's Story My name is Heather, I live in Wollongong (NSW) about an hour south of Sydney. My son, Luke (18 months old), was recently diagnosed with Kabuki Syndrome. It has been the most difficult, emotional time of my life and I don't even know where to begin with the story. I'm still trying to figure out what KS even is! I'm American (from California & grew up in Washington state). My husband, Mark is Australian. We have one child, our gorgeous and amazing little boy, Luke. A 18 week scan found a long list of problems, and we were encouraged to terminate the pregnancy. Luke was born with imperforate anus and coarctation of his aorta. He had a colostomy from 24 hrs old to 10 months. He had surgery for his coarctation at 3 days old, an anoplasty to create an anus at 6 months, a reversal of his colostomy at 10 months, and grommets (tubes) for chronic ear infections at 15 months. He has s syrinx in his spine (possible tethered cord) - they are monitoring with MRIs. He has severe constipation - (he is on Movocal every morning to keep him going). He also has global delays - (they placed him at 9 months when he was 16 months). He is just beginning physio, speech therapy and is on the waiting list for the Early Learning Program. That's about all for now. Please feel free to ask me any questions or offer words of wisdom and advice. |