Post by Amy Lombardi on Apr 1, 2009 9:12:26 GMT -5
Subject: so many questions
Name: Brandy Wempner
Date Posted: Jan 17, 09 - 9:14 PM
Email: Click here to Email
Message: I posted last month when we first found out our 5 year old has Late Infantile Battens. Since then I have come accross so many helpful people. I still have so many questions. The biggest one being ,"How long do we have?" I know there is no exact answer, but i read so many different things. I watch our baby boy struggle and wonder how long must he suffer? I get down right angry......! I am so confused.
Name: Dawn Sorenson
Date Posted: Jan 18, 09 - 9:05 AM
Message: Brandy, I'm so sorry to hear of yet another family struggling with this disease. My heart is with you.
My daughter, who died at age 8, had Late Infantile, and like you, I also needed to know what the timeline was going to be...how long do we have, what can we expect, etc.
During Tina's illness, I was not aware of the BDSRA site, so I didn't have the support that others have now. The doctors all told me to try to stay "in the moment", not to look forward. But I needed to know and it was very difficult not knowing. What I have learned, Brandy, is that every child is so unique in how Battens affects them. They deteriorate at different stages, plateau at various times, and so on.
To answer your question of how long you have with your son, I don't think anyone can answer that.
However, what I can say (from experience), is to really value the small things that your son does...the little things that seem so minute to an average child, but are huge for your child! If you can videotape your child doing things, do so...that will be a keepsake forever. cuddle with him any chance you have. smother him with love. be gentle with yourself. take time out for you. that is really important, believe me.
Name: Nikki Vigil
Date Posted: Jan 21, 09 - 7:58 AM
Email: Click here to Email
Message: Our daughter was diagnosed with LINCL last January and at first I wanted to know exactly how long I had and all kinds of things about the progression of the disease and what would happen. I've found it helpful to just take one day at a time and focus on enjoying every minute that I can. I think everyone's regression is so different that it would be hard to know exactly what your timetable is.
Plus, I try not to focus on the end result of the disease. I don't think it's a bad thing to have a little hope and positivity and keep you child engaged in every possible activity you can for as long as you can. Mary Payton has alot of struggles, but still alot of smiles and happiness. Focusing on the good stuff is what keeps my daughter and our family happy and functioning. I don't think it's a bad thing to think ahead...but maybe we don't need to look so far ahead all the time. At least that is what is working for me.
Please feel free to contact us if you need anything. nikkivigil@bellsouth.net
Name: gene jersha
Date Posted: Jan 21, 09 - 3:47 PM
Email: Click here to Email
Message: Hi. Daughter Jamie was 6 1/2 when she passed away.her picture is on the angels area. Like others are telling you, dont dwell on that. Where do you live ? Try and come to the conference in St. Louis. gene
Name: Brandy Wempner
Date Posted: Jan 17, 09 - 9:14 PM
Email: Click here to Email
Message: I posted last month when we first found out our 5 year old has Late Infantile Battens. Since then I have come accross so many helpful people. I still have so many questions. The biggest one being ,"How long do we have?" I know there is no exact answer, but i read so many different things. I watch our baby boy struggle and wonder how long must he suffer? I get down right angry......! I am so confused.
Name: Dawn Sorenson
Date Posted: Jan 18, 09 - 9:05 AM
Message: Brandy, I'm so sorry to hear of yet another family struggling with this disease. My heart is with you.
My daughter, who died at age 8, had Late Infantile, and like you, I also needed to know what the timeline was going to be...how long do we have, what can we expect, etc.
During Tina's illness, I was not aware of the BDSRA site, so I didn't have the support that others have now. The doctors all told me to try to stay "in the moment", not to look forward. But I needed to know and it was very difficult not knowing. What I have learned, Brandy, is that every child is so unique in how Battens affects them. They deteriorate at different stages, plateau at various times, and so on.
To answer your question of how long you have with your son, I don't think anyone can answer that.
However, what I can say (from experience), is to really value the small things that your son does...the little things that seem so minute to an average child, but are huge for your child! If you can videotape your child doing things, do so...that will be a keepsake forever. cuddle with him any chance you have. smother him with love. be gentle with yourself. take time out for you. that is really important, believe me.
Name: Nikki Vigil
Date Posted: Jan 21, 09 - 7:58 AM
Email: Click here to Email
Message: Our daughter was diagnosed with LINCL last January and at first I wanted to know exactly how long I had and all kinds of things about the progression of the disease and what would happen. I've found it helpful to just take one day at a time and focus on enjoying every minute that I can. I think everyone's regression is so different that it would be hard to know exactly what your timetable is.
Plus, I try not to focus on the end result of the disease. I don't think it's a bad thing to have a little hope and positivity and keep you child engaged in every possible activity you can for as long as you can. Mary Payton has alot of struggles, but still alot of smiles and happiness. Focusing on the good stuff is what keeps my daughter and our family happy and functioning. I don't think it's a bad thing to think ahead...but maybe we don't need to look so far ahead all the time. At least that is what is working for me.
Please feel free to contact us if you need anything. nikkivigil@bellsouth.net
Name: gene jersha
Date Posted: Jan 21, 09 - 3:47 PM
Email: Click here to Email
Message: Hi. Daughter Jamie was 6 1/2 when she passed away.her picture is on the angels area. Like others are telling you, dont dwell on that. Where do you live ? Try and come to the conference in St. Louis. gene