One year ago...

Posted on: 07/06/2015

It's hard to believe that a whole year has passed since the ArchAngel fundraising dinner! Here is the blog entry from 6 June 2014: "I am delighted to report that last nights ArchAngel dinner and auction in London were a phenomenal success. The auction alone raised a staggering £71,000!!! That figure does not include other donations made on the night, plus profit from ticket sales, which are all still being collated. Richard and I cannot thank the wonderful ArchAngel trustees enough for bringing this event to fruition in spectacular style. Laura, Ana Maria, Rachael and Louisa have worked tirelessly on this since it's inception and did the most incredible job. We were thrilled to have Dr Biffi in attendance, who spoke eloquently and impressed everyone with her remarkable knowledge and dedication to rare diseases. Our thanks also to everyone who generously donated lots and showed their support by attending, your kindness has simply blown us away. It was an incredibly emotional night for both of us and one we will never forget. Most importantly, we raised an unbelievable amount of money and are so proud of everyone involved for helping children with MLD."  Today I am still in awe of everyone involved. Such a lot has happened in the twelve months which followed... I remember when I left Milan for a fleeting visit home to attend the dinner, Ava went outside the hospital complex for the first time, to stay in centre of Milan with Grandma and Poppy. Starkly bald, she was still wearing an infection mask to go outside and really not eating or drinking much, but was in general doing well. We were all filled with a mixture of relief, fear and hope. Since then, a good deal has changed. Before her new cells had a chance to mature and stop the disease, the effects of the intensive chemotherapy began to show. Ava's short term memory began to suffer terribly; she was unable to process numbers or remember what we were doing from one minute to the next. We worked intensively with a tutor over the summer holidays and although she reawakened some lost memory, she is still relearning things, mainly school work, which she had learnt over the last couple of years. Despite also doing daily physical therapy every day over the summer, her gross motor skills then took a major hit and her balance and coordination deteriorated significantly. Today Ava has a really strong immune system, a great appetite and a head full of soft, unruly hair. However she is still struggling to walk independently and is sad that she can no longer run. However we remain filled with hope for the future, as without the transplant it is unlikely that Ava would be walking at all. She would most probably not be talking either and would have had a feeding tube placed because of losing the reflex to swallow. And that is only the start of the horror which would inevitably unfold. So whilst we have a very long way to go before Ava is back to her old self, we are thrilled to be moving in the right direction. The wonderful thing about the fundraising dinner is that everyone who contributed has also directly helped other MLD affected children to have the chance of a positive outcome where they previously had no future.