Day +299

Posted on: 21/01/2015

Ava has had a good start to the term and was particularly happy last week when her physiotherapist Mel went into school to observe a PE lesson. Mel helped to work out some training so that Ava can take part in the forthcoming gym and dance display. This means a lot to Ava who is very conscious of her limits and always keen to try and do the same things as the other girls. We are still waiting for Ava's test results from Milan, however we did hear from friends there about an Italian new year tradition which took place near to the hospital last weekend. A huge bonfire was built in order to symbolically burn anything negative from the previous year. Some of the families currently in Milan for Gene Therapy created a big 'MLD' sign featuring all of the children's names, including Ava's, and watched it get ravaged by the fire. It would certainly be nice to think that MLD did its worst to Ava last year and that this year her new cells will get the better of it. Let's hope. The bonfire was particularly poignant as it coincided with the news that a very sweet little American boy, Tyson (6), could not go ahead with his treatment just a few days before the scheduled start date, because his disease has entered a phase of rapid decline. It is another reminder of how cruelly unpredictable MLD is and how incredibly lucky we were to have had Ava stable during the 10 month wait for treatment. Another reminder to enjoy and appreciate everything we have now. With impeccable timing, we were invited to a unique 100th celebration - actually the combined ages of a lovely family we know! We had a great afternoon chatting with friends and making a music video to One Direction's 'Live While We're Young'. It was a welcome blast of positivity and such a brilliant idea, I hope it will catch on. Sadly our combined ages add up to 105, but we are now looking for another excuse to throw a party, maybe for Ava's 're-birthday' (the anniversary of her new DNA) in March??