ArchAngel Blog

Today Nickie Aiken MP brought our Newborn Screening campaign to the attention of Boris Johnson at Prime Minister's Questions! Nickie began by congratulating Boris and his fiance Carrie Symonds on the news that they are expecting a baby, going on to state that we all want the best start in life for our children, including the knowledge that they are healthy. After being told by Nickie tha....

Today is Rare Disease Day and our Newborn Screening campaign has gotten off to a fantastic start. Yesterday it was given very prominent coverage in the Daily Mail. The article above takes the whole of page 4, which is truly excellent given how many other health stories are vying for position. The coverage is also echoed in Daily Mail Online and has already been shared over 300 times. Tha....

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,....

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 ....

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. 

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 

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 ....

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!

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....

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....