Welcome to our Visitors Book

hello,

i have spent a couple of days with jake these holidays, and i have had a fab time with him, it is very rewarding.

love rachel

I met sara's mum Wendy in NICU when my baby daughter was also sick. We have been good friends since then. Although Wendy and i discuss most aspects of our childrens conditions, this is the first time i have fully understood JS. Its a great website, with lovely inspirational stories. Wendy and Scott are the best parents in the world to Sara, and have also been a great support to me and my husband. I wish them all the very best with the birth of their second child at the end of july xxxx

Just wanted to say that I think the NEW flashing button is a great idea
for regular visitors to the site like myself as it immediately guides you
to new info
Love it keep up the good work

What a wonderful, informative and beautifully presented website! Faith, you are one in a million! Really couldn't have coped so well without your help and advice and now that we have this website it makes it so much easier. I have given the address to all our friends to help them understand JS a wee bit better. We are lucky to have such wonderful friends and they have made our situation so much easier. It is wonderful to read others experiences and I have now been in contact with other parents, it makes you realise that you are not alone. Faith, thanks again! Good luck to all xxxx

I know the Penman family personally and Sara is the most beautiful little girl. She has come on further than anyone hoped for and im sure this will continue. The way Wendy and Scott deal with Sara's syndrome is an inspiration to any mum (and dad).

Welcome Andrina,
We are glad you found us and it is lovely to hear how well Daniel is doing, he must be a hard worker, like all JS kids they have a lot of determination.

Just looked at this website and I'm usually no good surfing and can never find anything I want....But this website was so easy. I've just come across twins in my area (Southend) who have JS and are totally different to my 3 year old son Daniel (21/01/05). Daniel has development delay and is blind. He started sitting up when he was 23 months and now he is 3 years his progress seems to have raced forward. He walks with a rolator walker, he attends mainstream pre-school, he has learnt hand over hand makaton, not much in the way of words but he gets across what he needs. He is great at crawling and is learning actions to songs and is very pleased with himself. He has a 6 year old sister who doesn't pussy foot around him but loves having kisses and cuddles with him. After reading the notices in the gallery I noticed that most of the children have had apnea, which Dan seems to have escaped, thankfully. I'm glad your here and thank you. Good luck to all.

Hi Faith, this is a fab web-site and I want to thankyou again for helping me with mine. I promise not to pinch too many of your ideas!!

i have known little jake, faith's boy, for a while and i never realised the true extent of the illness he had. but i just want to say, this website explains everything but is also an inspiration!
well done and good luck x

I just wanted to thank everybody for their support so far.
JSUK would not exist if it was not for the commitment of several JS families in the UK who are working hard with myself to form this support group.The Joubert Syndrome Foundation has been very helpful & supportive to us &
we also have several volunteers who are working alongside us to make this a success.
Thankyou !

hello, im a friend of faith's just like to say the website is fab, full of information, I didn't know much about joubert syndrome but from looking on this site I now have some knowledge about joubert syndrome.

Congratulations on a fantastic informative website! We are are friends of Neve and Jo's and will be spreading the word as much as we can about the site. I am sure this will be a much needed lifeline to many people and we hope it goes from strength to strength.
Nathalie Beresford & Paul Fleet x

Faith

I love the site, thank you.....
It is so light and bright and cheerful yet the information is all just "there"
I wish this site had been around 2 years ago when Neve was first diagnosed then I wouldnt have felt so alone and out on a limb.....

Thank you again.

Jo

Congratulations for setting up this website I know how much this means to my friend and her family, and Im sure to many others. Keep up all the good work and support each other.

Well Faith, being your husband I know how much hard work you have put in setting up this website,you are a credit to our family and I am especially proud of you,well done!
and I am sure this site will give lots of comfort to others who visit,love you Dave x

Well Done Faith. This site will bring lots of support to the families in the U.K. I agree with you that the American site mostly seems to provide suppport for the families that live in America. I will be checking this site daily and if you ever need any help please call, Kate

A really comprehensive, informative and interactive website. Enjoyed the case studies, photographs and poems. Sara's story was a particularly heart rending tale of despair turning to joy.Certainly a warm and comforting site to go on for concerned and troubled partys. Faith mentions that the Joubert Syndrome Foundation was a comfort to her. I think this website will be a comfort to many as well. Keep up the good work Faith!

well done with the site
its very informative and set out so you can navigate it easily.
I read everything.
Its wonderful to help others out there who may be in the same boat.
With Love Kimxxx