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Covid-19 Information - Click here to view this entry

Covid-19 Information

Fri Apr 17 2020
Genetic Alliance UK (of which ArchAngel is a member) have created this extremely useful hub of resources and information for anyone with a rare disease during the Covid-19 pandemic. [link]
Happy 6th Re-Birthday Ava - Click here to view this entry

Happy 6th Re-Birthday Ava

Sat Mar 28 2020
Happy RE-birthday Ava! Today is the 6th anniversary of Ava receiving her life-changing new DNA. Never have we been more grateful to have this ray of sunshine safe and well. Tomorrow we would have been flying to Milan for Ava's follow-up checks, now postponed due to the Covid-19 crisis. Our thoughts and prayers are with all of the remarkable medics there who not only made Ava's second cha....
Happy Home-made Mother's Day - Click here to view this entry

Happy Home-made Mother's Day

Mon Mar 23 2020
We have been in self-imposed isolation as a precautionary measure for Ava since 12th March. We have done twice daily video calls with school and Ava has had over 2 hours of 1:1 lessons every day, which have worked brilliantly. Angelina is home from boarding school and Richard is working from home. So far so good. Today Ava received an official letter from the NHS stating "you are at risk of s....
Coronavirus concern - Click here to view this entry

Coronavirus concern

Thu Mar 12 2020
Whilst we continue to have good press coverage of our NBS campaign, the news is now increasingly dominated by Coronavirus. It is particularly worrying to hear about the huge increase in cases in Italy and the tragically high number of deaths there. Last night I spoke with Ava's neurologist in Milan, as we are due there at the end of the month for Ava's 6 year post-transplant follow-up. U....
PMQ's - Click here to view this entry

PMQ's

Wed Mar 11 2020
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....
Rare Disease Day 2020 - Click here to view this entry

Rare Disease Day 2020

Wed Apr 15 2020
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....
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 

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