I really admire you for your passion and dedication to start this up. I am in New Zealand but would totally be in to trying to give the
''stones" a launch. After 2 years in the PICU, and even 3 .5 years being home, all the same Consultant DRS are the same, but the registrars could really learn from your video and letter!! I still have many contacts. Our main resp dr suggested I start a support group recently (now my headspace is better - only taken 5 years!!). We just don't have any thing for the people like the trache group and I have been thinking about this. If you want to stick to US I TOTALLY understand. And if there is anything I can offer from down under let me know.
Can I also ask, on your Willow Tree foundation site, there is a letter from Carrie (assume a friend) with son Jack who has a giant Ompalocele and trache and PSH. My boy has all of these and some which is called Pentalogy of Cantrell, but I never find anyone who has this combo. If she wants to contact me, can you please share my details.
Thanks and great job on getting this happening. I really do want to help so if you think there is something I can do let me know.
Mum to twins (Mitchell and Holly) born 10 Dec 2003. Mitchell's dx is Pentalogy of Cantrells. Trache since January 2005, NG, ventilated on HT-50 and on oxygen overnight. DX includes: giant omphalocele, ASD, GORD, CLD, cleft-sternum, sub-cutaneous IVC and right atrium, muscular defect of central diaphragm, Pulmonary Hypertension, GDD, Pulmonary Stenosis, spinal cord syrinx. Holly is a happy healthy 5 year old!