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Well done Richard! - Click here to view this entry

Well done Richard!

Thu Oct 17 2019
We are super proud of Ava's Dad Richard for running the Royal Parks Half Marathon 2019. Not only did he finish in an impressive 1 hour 36 minutes, beating his previous time, but he has also raised valuable funds for both ArchAngel and the Royal Parks charitable trust. 
5.5 year checks in Milan  - Click here to view this entry

5.5 year checks in Milan

Thu Sep 19 2019
We have had a lovely and sunny few days in Milan. All of Ava's test results are stable and it has been great to see so many of the kind doctors and nurses who have become our friends over the years. We are also delighted to have been invited to Rome this December to celebrate the 30th anniversary of Fondazione Telethon, the Italian charity who funded the ground-breaking research for the gene ....
Back to school - Click here to view this entry

Back to school

Thu Sep 12 2019
After a lovely summer break, Ava has had a great start to the school year. She has been happy to meet some new class mates and the teachers have been delighted by how much information she has retained over the holidays. Her first day back at therapy was also excellent - not least because friendly dustman Tony was waiting with a huge box of Krispy Kreme donuts for Ava and her school friends! This&n....
NBS news - Click here to view this entry

NBS news

Mon Aug 12 2019
ArchAngel is delighted to announce the appointment of Pat Roberts as Director of Newborn Screening Project. It is our ultimate aim to ensure that all UK babies are screened for Metachromatic Leukodystrophy at birth. New treatments such as the Gene Therapy which Ava received can dramatically change the predicted course of this disease but timely intervention is crucial. We intend to make a for....
Ready for summer - Click here to view this entry

Ready for summer

Wed Jul 24 2019
Ava's school is finally out for summer (Angelina has already been home for 3 weeks!) and we are looking forward to spending some quiet time in the country catching up with family and friends. Unfortunately the NHS are still refusing to fund any therapy for Ava during holidays (an ongoing battle in which we are sadly not alone), so we will be trying our best to keep her moving, including using....
A day to remember - Click here to view this entry

A day to remember

Mon Aug 12 2019
Ava had a wonderful day at Royal Ascot today. She loves horses and was delighted not only to see the racing but to also pick 2 winning horses, chosen by their jockey's pink silks of course! The highlight of the day was seeing Her Majesty The Queen leave, especially as she looked directly at Ava and waved at her. Ava was absolutely thrilled to have seen The Queen at such close range and equall....
A brilliant gift - Click here to view this entry

A brilliant gift

Mon Aug 12 2019
Heartfelt thanks to the kind pupils, parents and staff from Francis Holland School, who have so generously gifted Ava this 'off-road' wheelchair. It is an incredibly thoughtful gift and one which is deeply appreciated. It's easy to forget how much one can miss out on when reliant on a wheelchair. This 'Delta' all-terrain buggy from Delichon has already allowed Ava to acces....
Happy Easter! - Click here to view this entry

Happy Easter!

Mon Aug 12 2019
Ava was happy to see the Easter Bunny at breakfast today and is looking forward to a day of Easter arts and crafts in the Kids Club.
Hurrah for holidays - Click here to view this entry

Hurrah for holidays

Wed Apr 17 2019
We haven't had a holiday since October 2016, so have come to the Maldives for a long-overdue break. Travelling with a disabled person is never straightforward, especially when airlines don't pay any attention to the information on your MEDIF form... however we survived the 14 hour journey and are determined to enjoy this beautiful, peaceful place. Ava is struggling with the heat a l....
Special visitors - Click here to view this entry

Special visitors

Mon Aug 12 2019
Ava got the biggest surprise today at school when two of her most treasured friends appeared to celebrate her 5th re-birthday. Luisa and Margarita are super-talented dancers who joined a top ballet boarding school for year 7. They couldn't make Ava's re-birthday party yesterday, but came straight to see her the minute their term ended today. They were armed with gorgeous gifts for A....

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