Rett Syndrome

[Lucy8899]

Hello everyone, this is my first post on mumsnet. I've joined in the hope of finding other parents out there who have children with Rett Syndrome. My youngest daughter has this and it's so tough :( would be nice to chat to other people.

Lucy x

I don't but I'm hoping by replying someone else will see and reply who does.

Thank you x

Hi, welcome to the boards.

Are you on Facebook? My DS is autistic but also has a rare autoimmune condition, and I have found a Facebook support group with parents from all over the world which has been really helpful.

to you.

Welcome! I'm not a parent of a child with Retts, but there is a girl at my daughter's school who has it, so I can imagine how tough it can be. Welcome to the boards!

Thank you for your comments! I'm not on Facebook no, there's a charity called Rett uk who I know do events throughout the year etc but they're always so far away from where I live lol so was hoping to meet people on here. It's so rare so hard to find people lol x

Hello Lucy, Yes I have a daughter with Rett syndrome. though she is an adult now - 24 today! I am also CEO at the Charity Rett UK which provides support to families affected. Is your daughter recently diagnosed? Perhaps you have already been in touch with us. Either way I am happy to have a chat with you if that helps.

Hi Becky! Thank you for commenting, my daughter was diagnosed over a year ago, feels like yesterday still though. Yeah I have been in touch with Rett uk and they are so lovely and supportive over the phone. I also did meet someone from rett UK when we had a meeting with the rett clinic at evelina in London, which was also really helpful. Would just love to be in more contact with people, it can get a bit lonely sometimes. My family and friends are so supportive but to find someone who knows 100% what we're going through would mean so much. Oh wow 24 today! Happy birthday to your daughter! How is she? X

Hello Lucy, ah glad you have been in touch and have found it helpful:) yes that would probably have been Julie then. It can be very isolating I know, even with the support of family and friends. We could see what other families are in your area and put you in contact with them if that would help? We have a programme of events for 2019, it moves around each year so hopefully there might be something nearer to you this year. I am in Sussex but always happy to have a chat over the phone. Rosie is a beautiful and delightful young lady who lights up everyones world with her smile and infectious laugh! She is a terrible flirt, loves Olly Murs and pasta - in that order! I won't lie it is not easy though and she has her health niggles but overall she is in pretty good shape, has a very good quality of life and certainly give it her all. x

Hi Becky so sorry it's taken me so long to reply. Yeah if you know anyone near to me that would be great. Seems like we're having more and more bad news lately so it's been a tough few weeks. I really wanted to try Megan with the eye gaze, obviously it's ALOT of money so the school sorted out an assessment with STARK I think it was who fund the eye gaze, she had the assessment today and they've refused :( so now I need to try and raise 11 grand to get her one, but I won't give up and do everything I can to give her a voice. X