feb 2012 210
"i love you and miss you dave, god bless you and keep you safe till we meet again, ni night sweetheart xxxxxxx"
Lesch-Nyhan Disease support group
The network for people living with the Lesch-Nyhan Disease, their parents, teachers and anyone interested in learning more about LND.
Latest Activity
julie glover left a comment for susan marshall"hi sue its julie from newport !! how are you doing? it was so lovely to talk with you the other week, nice to see you on here !! let me know how things are xxx"
julie glover commented on julie glover's photo
feb 2012 146
"my two sons with LND, david on the left passed away feb 2012, royston on the right is 32yrs old now., my lovely boys !!"
Samantha Heslop posted a discussionLND UK
Hi all, A few familiess in the UK are getting together in Blackpool on 6-7th of July, we would like as many as possible there to share ideas and experiences and just a good laugh. Any questions email me and I will see what I can do to help, some of us have booked into the travel inn in central Blackpool on the Friday night. Hope to see you soon. Samantha See More
Allison Early left a comment for crystalanddavid"Hi Crystal and David - my family is thinking of re-locating to Indiana and I was wondering what health coverage is available for LND boys through the state. We're in Idaho right now and Grayson gets Medicaid through the Katie Beckett…"
Jane Arnold replied to Jane Arnold's discussion Update on DBS Surgery - 6 Month Review Callum"Sorry to hear about things not going well for Janek but it will be ok next time I'm sure.
Thank you.
Jane
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LND UK
Hi all, A few familiess in the UK are getting together in Blackpool on 6-7th of July, we would like as many as possible there to share ideas and experiences and just a good laugh. Any questions email…Continue
Started by Samantha Heslop in Caregiver Exchange May 6.
Update on DBS Surgery - 6 Month Review Callum 4 Replies
Callum has been going back every month to London for a check up and any alterations to the settings on the stimulator. 6 months after the operation - here are the improvements so far:-Callums biting…Continue
Started by Jane Arnold in Caregiver Exchange. Last reply by Jane Arnold Apr 27.
Desperate times led to this...but it works :) 8 Replies
Just wanted to share a lip guard I had to make when my Davey had a very hard time with his lip a few weeks ago. Although his glued on mouth guard keeps his whole lip from being bit off, he needed…Continue
Started by Wicklund in Caregiver Exchange. Last reply by julie glover Apr 24.
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