Fundraiser for The Ryan Stanford Appeal at Bravissimo: Bravissimo

Customers will receive refreshments upon arrival, 10% discount on purchases made on the night, a sneak preview of our new winter collections as well as a chance to support The Ryan Stanford Appeal with a raffle and tombola in store. To find out more about the charity please read below. "My name is Jan Reed and I wanted to tell you about a charity event that my colleagues and I are holding at Bravissimo Pepperberry on Monday 4^th November, for The Ryan Stanford Appeal, the charity is very close to my heart and I hope in reading my story that itll touch your heart today too. On Sunday 18^th December 2011, I became a very proud Grandma to Riley Anthony Jones, my youngest daughter Tonis first baby. He was the most perfect and beautiful boy we had all longed for. As the months past he learned to say Mama, always laughing and he loved to watch his favourite movie Happy Feet, he giggled every time he saw the dancing penguins. However we were a little concerned that Rileys development was progressing slowly, he didnt seem to be able to support his head on his own, he couldnt roll over and he couldnt sit up without being supported. On Friday 3^rd August, Riley started shaking violently, an ambulance was called and we were rushed to hospital. We were taken to the RVI and we were told that Riley was having a fit, the fit lasted 60 minutes. We were worried sick and seeing our beautiful boy like that was heart-breaking. Various tests were carried out to determine what was causing the fit. A week in the hospital and test after test after test was completed but nothing was revealed so Riley was discharged. The next night Riley had a seizure which affected the full left hand side of his body, our concerns grew and we just wanted to know what was causing our baby such pain and distress. After another seizure, this time affecting his right hand side, he was admitted into the Intensive Care Department at the RVI. In the ICD unit they induced Riley into a coma so they could carry out strenuous tests. It was on Friday 7^th September that we were given the devastating news that would change our world forever, our beautiful boy was suffering from a very rare and aggressive disease called Alpers Syndrome, he was only 9 months old and we were told that he would probably not make it to his second birthday. Alpers is a progressive degenerative disease of the nervous system that occurs in infants and children. He was unable to move his right side at all. He was on a lot of medication and he now was no longer able to swallow. But there he was our beautiful boy, so small, so poorly but smiling that little smile that melted our hearts. The doctors were very concerned with how quickly his condition was deteriorating, our concerns grew too. How was this happening, why was this happening, every day became more precious. We never left his side for a second. On Sunday 25^th November, after Rileys seizures were becoming more frequent and aggressive we were given the worst news ever, the disease was progressing at a far greater pace than originally anticipated and rather than years we only had weeks left with Riley. My heart was broken, but I could not let Riley see his Grandma cry. I was crumbling inside but I had to be strong. My tears were shed when Riley was sleeping and while he was awake he saw only smiles. The whole family was devastated. On Thursday 6^th December, we took Riley home; we wanted to make the most of what little time we had left with him. We wanted to cherish every second and we wanted him to be around his family and surrounded by his loved ones, rather than tubes and machines. Sunday 9^th December, just over a week until his 1^st birthday, Riley passed away peacefully, taken from us too soon. My life will never be the same again. Riley was taken from us by a rare and terminal illness that is so rare most people have not heard of Alpers Syndrome. My family was contacted by the Stanford family who set up The Ryan Stanford Appeal , after they too received the shattering news that their little boy had the terminal illness too.