Get Neve to Chicago

Helping Neve to America Neve was diagnosed at age 8 weeks old with a rare genetic condition, Joubert Syndrome, the syndrome means that part of Neves brain, the cerebellar vermis, has not developed properly. This causes various problems, including global delayed development, visual impairment, balance & co-ordination problems, breathing problems.  There are other things affected by this syndrome too although Neve is currently not showing signs of those, they include, cysts of kidneys which can lead to kidney failure, liver problems, degeneration of eyesight. Joubert Syndrome affects approximately only 800 people worldwide, there currently IS NO official research into this syndrome here in the UK, there are NO dedicated professionals to turn to. When Neve was diagnosed I was told that she would probably only live till the age of 3, however she is now 9 years old, she is non-verbal, totally dependent on us for all her needs, she cannot dress herself or bathe herself, she can walk but only with the use of her walking frame, or with the full support of an adult.  She has tests twice a year to check her kidney and liver function, as it is documented that should a child with Joubert Syndrome reach teen years then that is when kidneys may start to fail. We have the opportunity of travelling to America in July 2015 to meet with professionals, dedicated to researching and developing therapies to help children like Neve.  We are hoping to receive some long awaited answers while we are there as well as gleaning information as to how to help Neve reach her full potential during her somewhat shorter life expectancy.  We are expecting the total cost of travel, accommodation and conference fees to total around £6000.  We are hoping to do bits of fundraising in order to help with this cost and would appreciate any help you could give.