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Important News - Click here to view this entry

Important News

Fri Feb 28 2020
Today we launched the Archangel Newborn Screening Review campaign with Nickie Aiken MP. We are calling for urgent review of UK newborn screening policy, which is now badly out of step with advances in medicine and other European and high-income countries. Big changes need to be made if we are to save babies from the MLD and other devastating diseases. Please sign and share our vital petition,....
One Rich brother - Click here to view this entry

One Rich brother

Thu Feb 20 2020
Ava was super-excited to meet David Rich of Rich Landscapes today. Ava is a big fan of gardening and cookery, as these are things she can enjoy and participate in much more easily than other things which she can no longer physically do. One of the programmes Ava likes to watch is BBC 'Garden Rescue', so when we were talking about desperately needing some help and inspiration for our own ....
'Innowalk' trial - Click here to view this entry

'Innowalk' trial

Fri Jan 31 2020
Today Ava had a fantastic trial of the 'Innowalk' all-in-one standing/walking machine. Ava walked for 34 minutes and enjoyed every second. We're hoping to get one of these for Ava to use on a daily basis instead of 3 seperate pieces of equipment which she has now outgrown. 
A spot of gardening - Click here to view this entry

A spot of gardening

Sat Jan 25 2020
Ava has been enjoying time outdoors helping Daddy tidy up the garden in preparation for spring. She has been so good at supervising branch clearing and log chopping that she has been promoted to Assistant Grounds Keeper 
Happy 2020 - Click here to view this entry

Happy 2020

Fri Jan 3 2020
A very Happy New Year from our family to yours. We're starting 2020 with some great news - after significant resistance, the NHS have finally agreed to fund out of term time therapy for Ava. We are hopeful that this much-needed continuity will give Ava a physical boost and go some way towards preventing further issues with her right hip, which is beginning to dislocate. It has been a lengthy ....
Merry Christmas - Click here to view this entry

Merry Christmas

Fri Dec 20 2019
Ava has had another great term at school and ended it with a visit to Santa and switching on the Christmas lights at Chelsea and Westminster Hospital. Merry Christmas everyone!
TV Star - Click here to view this entry

TV Star

Sat Dec 14 2019
We were proud to appear on TV in Italy this weekend in support of Fondazione Telethon. This charity funded the ground-breaking Gene Therapy trial which Ava took part in and much more life-saving medical research. A special week of programmes reached 25 million Italian viewers and raised over 45 million Euros! As well as having a lovely weekend in Rome, we also got to catch up with several other ge....
Happy 13th Birthday Ava - Click here to view this entry

Happy 13th Birthday Ava

Sun Nov 24 2019
Our shining star is now also a teenager! We had a lovely celebration for Ava's birthday, including a family dinner with a fantastic singer who performed all of Ava's favourite Disney songs. We also had a brilliant fireworks display and floating lanterns. 13 is a big birthday for many, but its even more poignant for us. When Ava was diagnosed we were told she wouldn't make it to teen....
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 ....

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