Day +187 - Image 1

Day +187

Posted on: 02/10/2014

Today was a good day at the hospital. Ava finished her assessments and we met with Dr Biffi for her discharge. We are now allowed to travel home tomorrow, a day earlier than expected, which is great. The hospital staff have been super-efficient this visit and made things as easy as possible for us. We are due back in late December for the next series of checks, which should be quicker again. After today's tests Ava and I took our customary walk to the lake to feed the ducks and turtles and enjoyed our first sunny afternoon since arriving on Sunday. We also paid a visit to the hospital zoo and Ava marvelled at the size of the cygnets, which are now almost the size of their parents and just as fierce. Today I also met with Fondazione Telethon, the Italian charity who fund the research into rare diseases at San Raffaele and without whom the Gene Therapy project for MLD would not have come to fruition. ArchAngel is proud to have raised a huge amount of money for them, thanks to your generosity, and today I heard where our funds would be directed. Dr Biffi is conducting further research into treatment for the MLD patients who do not qualify for Gene Therapy, which has very strict acceptance criteria. She will also direct funds towards therapies helping to alleviate symptoms and prolong the life expectancy of MLD affected children not eligible for any of the specific treatments she is developing. We are ever grateful to everyone who has so kindly donated, you will have made a real difference to all these children's lives.




©2024 Copyright ArchAngel MLD Trust
Website by Modern Websites