Happy New Year! - Image 1

Happy New Year!

Posted on: 31/12/2014

What a year. We have gone from the agonising worry about Ava being accepted for Gene Therapy to the indescribable joy of seeing her new life-saving cells being transplanted. We have been through the massive upheaval of our family being split in half for the four month marathon in Milan, only to return home to the fall-out of further disease progression and on-going repercussions of the trauma all round. Yet my lasting memories of this year will not be of the difficulties, but of the people. The people who are part of, or who have come into, our lives and shown us extraordinary support and kindness. Richard, Ava, Angelina and I have many people to thank for helping us through this year's challenges, including: Dr Biffi who has dedicated her life to conquering rare diseases and given us priceless hope for Ava's future. Her team who treat us with such warmth and compassion and who made our time in hospital so much easier. Our selfless family members who dropped everything to facilitate our time in Milan and made it bearable. The friends who so honourably came together to form ArchAngel, not only to support our family, but to take on the fight of fundraising for a rare disease and bring hope to many other families. The community of parents at Francis Holland school, many of whom we have never even met, who supported ArchAngel without hesitation and with staggering generosity. Everyone else who so magnanimously donated, making a tangible difference to both crucial research and the quality of MLD affected children's lives. The friends - and strangers - who took the time to email words of encouragement or send thoughtful gifts whilst we were away. The new friends we made in Italy who overwhelmed us with their goodwill and the old friends who have helped us regain our equilibrium with lunches, play dates and everyday normality post-Milan. The remarkable head mistresses and teaching staff at our school who have gone out of their way to make both Ava and Angelina feel loved, cared for and safe at all times. Ava's therapists, without whose dedication she would have surely lost more ability in these last few crucial months. The UK doctors who, after a long struggle, have finally engaged with Ava's needs and joined me in the fight for her to be treated fairly. Last, but by no means least, everyone reading this blog and following Ava's progress. It is truly heartening to know that so many people care. We are humbly grateful to you all and wish everyone a happy, healthy 2015.



©2024 Copyright ArchAngel MLD Trust
Website by Modern Websites