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

Hide Replies ( 1 )

I would like to hear from those of you who have used or may be using Hoyer Lifts. Did you find the lift to be very helpful? I am being encouraged to get one to use with our daughter- just very unsure as to whether I want one.

Show Replies ( 3 )

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

Show Replies ( 0 )

My son Thomas (Infantile) has been producing a MAJOR amount of mucus. He is especially mucussy in the evening and thru part of the night. We give him medicine (Robitussin) to help break it up, but it really doesn't work. The mucus is SO thick that it takes forever and alot of work to get it up thru his G-tube and during that time he is gagging and swallowing air therefore, we can't release the air building up in his stomach due to the blockage of the mucus in the g-tube. Our pediatrician doesn't give me any ideas although he did give us a prescription for a medicine that will dry up secretions (seemed to worked the first few days but not anymore).

I know if someone was in the hospital and had to be given medication for mucus relief, they wouldn't pull out robitussin from over the counter.

Any suggestions or any doctors that specialize in this type of problem?

Thanks

Show Replies ( 2 )

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 ;)

Show Replies ( 3 )