Hi, my name is Josh, myself and a group of friends are raising money to support Rory's ongoing treatment. We will be walking from kidderminster to the base of Snowdon is Wales (98.8 miles) then climbing Snowdon and down. This will take place over 4 days. Rory arrived three and half weeks early in December 2019, he hasn’t stopped racing around since. A little brother to Reuben. His journey began when he failed 2 hearing tests in hospital. Further tests confirmed that he was moderately to severely deaf. Rory was given his first hearing aids at just six and half weeks old and now at the age of 3 Rory has just received cochlea ear implants in May. However, further testing to find the root cause of Rory’s deafness, revealed that Rory has a very rare genetic condition named Wolfram Syndrome – his family received this devastating news on 16th February this year. Since this day we have found out that Rory actually has ‘Wolfram like’ or WSF1 Related disorder. There is very little known about this disorder but there are experts who are researching and there are trials taking place in small pockets across the world. For those who know Gino’s daughter Rachel, Tim and their families you will know that they are working tirelessly to get the right support and treatment for their little blue eyed boy, Rory. A beacon of light has shone from not only Birmingham Children’s Hospital in the form of Professor Tim Barrett but also across the pond at the University of Washington from Professor Fumi Urano who specialises in tackling one of the many and cruel symptoms, sight loss. It is here in Missouri where Rory’s journey will take him, and therefore Raise for Rory was born!
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