We would like to know what topics you want to discuss in our new forum. Post your ideas here.
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What would you like to see here
Thu, 2011-08-11 15:33
#1
What would you like to see here
Mon, 2011-10-03 12:09
#2
Brilliant idea to have a forum. As Katie's epilepsy was becoming steadily worse I found a lot of really valuable information on an epilepsy forum. It was also quite emotionally supportive.
Given the medical issues that our Battens children suffer over time, I think it could be a great source of info for parents and professionals alike.
For example, we managed to get Botox injections for Katie to reduce the effects of muscle spasms. Not sure how many people have heard of this, and some docs are reluctant to do it. However, we found it greatly beneficial.
As you go through the process, there are a huge variety of drugs available, and I think some discussion amongst parents about what has been successful for them could prove a really beneficial thing.
Sun, 2011-10-23 11:56
#3
Hi
My Grandson Nathan has been diagnosed with Battens this year he is only 2 years old and has regressed very quickly. he is the youngesst of four and both myself and daughter Sarah have found it hard to find information that is helpful and hopefully joining the forum will help. Also Sarah is keen to hear from other parents I suppose anything that helps really. Thanks
Tue, 2011-11-01 06:12
#4
Hi Theresa, My grand daughter Heather is 7 in January, I know what you mean, the regression, going from a precocious 2 year old and losing her abilities, well it's heart breaking. I have Heather quite a lot, and have had to deal with things you couldn't imagine, from getting your head round the fact that you have this terrible dissease in your family, to what to you do if her feeding tube comes out. In this journey, there are some really bad times but also incredibly good ones. Like the first Batten conference I attended. Up till then we, as a family and individuals, felt isolated, no-one I knew could possibly know what we were going through. I felt this diagnosis of something, so rare, was the worst news anyone had ever received. I stopped talking about it because I would either cry or I'd make someone cry. Sam from family support was brilliant. Getting back to the conference. Meeting other families that were all on the same journey, at different stages of the journey, well I learned a lot about how to handle this disease. If there's anything I can do.It won't be an easy journey but it can be rewarding. Do you have a copy of the bdfa family network. The people on that can be very helpful. Wishing you all the best Jan
Thu, 2011-11-10 07:39
#5
Hi all. My young brother has been diagnosed with Battens since he was about 4/5 years old. He has Late Infantile NCL. He is now 9 years old and cannot speak, move. We have to care for him 24/7 now. He cannot swallow and has a tube in his stomach for when we feed him. He is on like 8 medicines (i've raised concerns about this as they are strong medicines but im still reading up on more information yet).
Jan, can I have a copy of the BDFA family network please? We feel isolated as a family as my dad left his job to become a full-time carer. We just need support and those who know what we're going through.
I want to raise funds and awareness of Battens Disease as I am determined to find the cure to this horrible disease, watching my brother regress so quickly has been soul-destroying. However I am willing to give my time if its going to help others.
I'd like to get in touch with other,s going through the same journey. Really appreciated, thank you. Rehman
Wed, 2012-02-15 06:02
#6
Hi Rehman,
Sorry for the delay in replying. My computor was down, I've just logged into the forum and saw your message. I know how you feel. Heather's just turned 7 and is on 9 different meds. I was reading my last post and that bit at the end, about this journey being rewarding, it sounded a bit glib. There is no reward in watching your child go through this decline but the people I've met, who are truly inspirational and what me, as an individual has learned is helping all of our family. You can get a copy of the Family network from the BDFA and they can maybe advise you on which is the best person to talk to.
wishing you the best
Jan
Tue, 2011-11-15 03:29
#7
Just want to comment on a wonderful website you have. More power to you guys.
Wed, 2011-11-16 06:07
#8
Great Website. Keep it up.
Fri, 2011-11-25 01:49
#9
Wish I had found something like this whilst the twins were still with us but I was young at the time. what an amazing site hope I am going to be able to take part in some fundraising in 2012!
Wed, 2011-11-30 03:08
#10
If you need any support with fundraising Nicole, you can give Georgette a call or email.
Wed, 2012-02-29 19:19
#11
Hi everyone. I think the new site is great but as always i'm akward and picky, The about battens disease tab is a great improvement on before with much more infromation, but the list of genes cln1 to cln7 is good but incomplete/missing cln8 or clnc6 genes so families just being diagnosed with thes genes looking for this information my find it hard to link the information there given with information on the site and understanding the difference between genes and the history and discovery of them.
For our family with cln8 we can only guess prior to the discovery/link in 2009 all cases prior were misdiagnosed.,...???
We are families all on the same journey, at different stages as the regression of each individuals differs as with the genes affected it only when you meet other family can you understand the difference in each case but the understanding you can get from a group helps along the way.
Thu, 2012-03-01 01:32
#12
Hi, thank you for your feedback. We are working with Dr Sara Mole and Dr Ruth Williams to provide an updated version of the current web page in conjunction with the updated material for NCL2012 at the end of March and hope to have it up and available as soon as possible.
Fri, 2012-03-30 11:09
#13
Hi all
My son Dylan (4) was diagnosed last week so I'm still struggling with this I would very much
Welcome coping strategies and info I'm a bit lost at the moment
Gem
Sat, 2012-03-31 01:31
#14
Hi Gem, if you want to give me a call on Monday 01252 416110, I would be pleased to discuss some of this with you. Thanks Andrea
Mon, 2012-04-02 00:09
#15
Hi gem sorry to hear of you're sons diagnosis, what type of batten does he have ? My daughter ashleigh was diagnosed in April 2008 with late infantile, I remember feeling very lost at that time, confused and shocked, being in contact with other families really helped me, seemed nobody else including doctors had even heard about batten so it was difficult to talk about it to anyone else, other mums have felt how you felt and it's a daily struggle but together we can learn to cope and enjoy life with our special children and laugh together and cry together and be angry together and swap advise on all sorts of issues that come with this awful devastating diagnosis. Speak soon x. Jayne x
Tue, 2012-04-03 15:15
#16
Dylan also has late infantile and thank you I'm very upset and angry
At the moment it's nice to be able to talk to people
Who understand x gem x
Tue, 2012-04-10 12:56
#17
Dear Gem,
I am the BDFA Family Support Officer. I can only begin to imagine how you might be feeling at the moment and hope that being able to connect with some parents and families who are also dealing with the impact of Batten Disease on their lives and those of their children, via this forum, has brought you some small comfort in the knowledge that you are not alone. I appreciate that my colleague, the BDFA manager, Andrea has already mentioned our phone number in an earlier post but wanted you to know that you can get in touch with me at any point, either now or in the future, whether you are looking for information, support, further contact with other families or simply someone to listen. My e-mail address is support@bdfa-uk.org.uk. Our best wishes go to you and Dylan - Matt
Sun, 2012-05-06 05:07
#18
To all you people suffering knowing someone with Batten's. My cousin was diagnosed with the disease. She started to struggle at school with reading the blackboard when she was about 7/8 years old. After many tests Battens was diagnosed. I was in my early teens when told she would lose her sight and be in a wheelchair. I couldn't believe that the cousin who I had enjoyed holidays with would no longer be able to do the things that we were used to.
We were also told that it would be very unlikely that she would live to see her teenage years out. She did.
She spent many of her days horse riding and her bedroom wall is covered with the rosettes and trophies that she received while being part of Riding for Disabled. She loved this so much that her mum and dad sold thier house and they moved to stables where she could ride,muck out and do all the everyday things that sighted people would do. It was amazing seeing her working with and riding the horses.
She married in 1998 and it was such an emotional day which none of us thought we would ever see.
She faced many problems and we would never know whether she would pull through. But each time she did. Until last week. My very brave and couragous cousin went to sleep and never woke up. She was 40 years old.
Rest in Peace Tracey. So proud of what you achieved in your life. XX
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