My daughter Madison is 14 1/2 years old JNCL. I was told about Ataluren today. Has anyone heard of the research involving Ataluren? It is being developed to treat nonsense mutation development disorders. I was directed to this websight... ptcbio.com I am not sure if this applies to Batten Disease. Does anyone else have any information? Thanks, Amiee

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hi My daughter Saoirse has started suffering from brain stem seizures and has had several of these in the past week, which last for upto 4 hours each and place her in a coma like state, we had been in hospital whilst this was happening and we were lucky. has anyone any experience of these? regards Tony

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Our dear sweet Hailey-Bear was layed to rest today and it was absolutely the hardest thing we've ever done. Her service was beautiful and we had an outpouring of support from family, friends, our church and community. She was beautiful in her "lellow" dress (her favorite color) and looked like the angel that has now become. While we will miss her dearly, we are so happy for her, that her suffering is over and she will finally get to have the childhood that she so deserves... in Heaven. Although I had taken her to China twice, I told her that I was sorry that I couldn't save her. I also told her to work her magic up there and get these doctors and researchers going so that our children can finally be cured. To those of you that have already lost a child to this horrible disease, please tell your children to keep an eye out for her. She will be easy to recognize with her beautiful blue eyes, long golden hair and her big, affectionate personality. Please remember our family in your prayers, to give us the strength to go on and continue to fight for our son Carter (who is also affected)and all of our other precious babies. Rest in Peace Hailey. You have changed our lives forever and inspired so many more. Our home will not be the same without you, though you will always be in our thoughts and prayers and we will still talk every day. I only wish I could peek up into Heaven to see how much fun you are having. We love you more than words could ever express and your story will live on forever. Mommy, Daddy and Carter love you so much. You are such a special little girl and you have taken a piece of our hearts to Heaven with you. We cannot wait to see you again ;)

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Hello. I haven't been on this site for awhile, and am now confused. Is this the new bulletin board? Also the one with the older posts appears to have some kind of a virus. I was really saddened to hear Darlene's news re. her girls. I wanted to send her a message, letting her know she and her family is in my heart. Darlene, I hope you get this. So much love to you........... Katarina Calderon

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Over the last two days I have noticed that my son has had decreased urine output. His formula has not changed, nor has anything else. He seems to be otherwise healthy. He had his last feeding at 7 last night, his diaper was dry at 8 when he went to bed and it was still dry this morning. Normally he fills a diaper right after a feeding. Is this something I should be worried about at this time? His nurse had mentioned that he was dry after school the last two days....not too concerned at the time because sometimes they change him right before coming home. Thanks

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