Sending Petra to Germany for essential radiosurgery
.Wonderful news, Petra had an MRI on Friday Nov 30th and now the clinic etc. has been booked. We're off to Germany in just over a week! Mid November. There will be a consultation before treatment.
Who knew, when fundraising started in early August that it'd happen so fast. We honestly thought it would take a lot longer.
We filled out the thank you page on this site, but we had a lot of anonymous donations too.
"Daisies are like smiles and when you trod on one, the next day it has popped back up to smile at the sun. Just like Petra has had to do so many times."
To find out more about this cause and why it was set up, please read the 'About Petra' page.
Since starting to raise funds for Petra's Trust, we have become aware that time has not improved the lack of awareness of N.F as a condition. When Petra`s mother was in her very early 20's, she was diagnosed with NF2. Petra was a 1 year old baby and the information was scarce and basically she was just left to get on with coping with a young baby and being suddenly deaf, very little has changed. The sparse amount of help available - speech therapists etc - do not understand the condition so cannot provide real help. When Petra was diagnosed at 13, her school did their best to support her but they didn't understand NF or ever have a deaf student before. The education assistant provided to the school was of no practical use because she was used to helping people born deaf, which is very different. Her family was scared for their own children because they didn't know how NF worked, even though Petra's mother had been living with the knowledge she had NF2 for about 10 years. All because the information and support was not there or easily accessible.
We need to raise public awareness and we need to give more support to those with N.F and their families, If any of you out there have ideas about achieving this please contact us at this site.
