Archived Entries from 2014 - 2015

Poor Ava was down with a stomach virus this week and I was quite concerned on several levels. Firstly, I was worried that her symptoms were as a result of the issue with her gall bladder which developed this summer. Secondly, she missed a good deal of therapy, as she was too weak to leave the house for several days. At this crucial stage, Ava can loose muscle strength and coordination at an alarmi....

Sad news last week. No sooner had we made contact with the handful of other families in the UK who have children affected by MLD, when we heard that one precious little girl, Harley (9), passed away. It was a heart-breaking reminder of how cruel and voracious this disease can be and how fortunate we are to have had a chance to prevent such a decline in Ava. I feel even more passionate about Dr Bif....

Today was Ava's 8th birthday and she has had a very happy day, the highlight of which was the entire school singing 'Happy Birthday' to her at lunchtime. She is normally embarrassed by a lot of attention, but this made her feel extremely loved and special. We are fortunate enough to have a wonderfully supportive school, with a tight knit community of very caring girls. We also celeb....

Please email us if you would like the password to access the blog: contact@archangel.org.uk

Last week was another good week for Ava, with lots of positive therapy sessions and some good new exercises, this week focussing on strengthening the muscles in her feet. We also had an extremely busy weekend, which included swimming, a play date, a visit to my Goddaughter and a birthday party. The fact that Ava copes well with such a hectic schedule is very reassuring. It is also great for Angeli....

Ava had a more varied week last week, including the excitement of going to soft play centre 'Gambado' in place of one of her routine OT appointments at Chelsea & Westminster hospital. The NHS facilities are poor in comparison to those at our private OT, however this week the therapist made a real effort to do something different and Gambado was a big hit. It was super quiet as we wer....

Ava had a good week last week, the first half of which was filled with excitement in anticipation of a trip to soft play centre 'Gambado', in place of one of her routine OT appointments at Chelsea & Westminster hospital. The NHS facilities are poor in comparison to those at our private OT, however this week the therapist made a real effort to do something different and Gambado was a ....

Happy Halloween! We have had a good half term week, which has been a busy rotation of tutoring, therapy and play dates. Ava has tried very hard in her occupational therapy sessions, boosted by the fact that Angelina has been allowed to join her, which has led to trickier obstacle courses and more risk taking. We are at a crucial stage in Ava's rehabilitation, where we must keep challenging he....

Ava has asked me to share the exciting news that Elsa from 'Frozen' has finally arrived! Ava had her eye on this Disney 'Animators Collection' doll for some time and was promised it as a reward for her incredible bravery in Milan. However Disney had sold out out of this doll world-wide and, verified by daily phone calls, were out of stock for over six months. She has finally ar....

Today ArchAngel donated an incredible 100,000 Euros to help fund more ground-breaking research into MLD treatment at the San Raffaele Hospital in Milan!! I am immensely proud of the ArchAngel team for their sterling fundraising efforts and ever grateful to everyone who has shown us their support. It is because of the kindness and generosity of our friends, our school community and followers of thi....