Sean, Thanks so much for responding to our questions. You have really helped just by letting us know that you've been through it and that there are bumps in the road, but you can get back on track. Our dietitian was actually very interested in your treatment when I told her about rare share and that you had posted that you had been diagnosed for about 15 years. Thank you also for pointing your mom in this direction. Jen

Sean, My son is 16 years old, and was diagnosed 6 years ago. Is it ok to have a voice conversation with you to ask you many questions ? I found some research scientists in Germany and England that I've been communicating with them, and it seems they are more advanced in Europe with Gene Therapy that can control the Ornithine levels and preserve the vision. Anyway, let me know if this is OK with you. I fly a lot so my access to computers are very rare.... hence my request for a voice call. I live in Maryland/DC area. Best regards Henry

Sean, My son is 16 years old, and was diagnosed 6 years ago. Is it ok to have a voice conversation with you to ask you many questions ? I found some research scientists in Germany and England that I've been communicating with them, and it seems they are more advanced in Europe with Gene Therapy that can control the Ornithine levels and preserve the vision. Anyway, let me know if this is OK with you. I fly a lot so my access to computers are very rare.... hence my request for a voice call. I live in Maryland/DC area. Best regards Henry