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Brilliant News for Ava - Click here to view this entry

Brilliant News for Ava

Sun Sep 6 2020
FANTASTIC news just received that the Local Authority and NHS have agreed to jointly fund this amazing 'Innowalk' machine for Ava! Earlier this year Ava outgrew 3 separate pieces of equipment: a standing frame, walking frame and movement trainer. Further to a successful trial of this machine in February, the excellent staff at 'Made for Movement' have been generous enough to lo....
CALLING ALL UK MLD FAMILIES - Click here to view this entry

CALLING ALL UK MLD FAMILIES

Sat Aug 29 2020
ArchAngel has joined forces with MLD Support UK and The MPS Society to support of the approval of Gene Therapy for MLD for use by NHS England. As part of the formal assessment process conducted by the National Institute for Health & Care Excellence 'NICE', we need to demonstrate the devastating effects of this disease on patients and their families. The survey below will give us vita....
THANK YOU Downe House - Click here to view this entry

THANK YOU Downe House

Fri Jul 17 2020
Just before the Covid-19 lockdown Ava's sister Angelina and her cousin Milly organised a 'Mufti Day' in aid of ArchAngel at Angelina's school Downe House. In addition to selling merchandise, they also held a raffle and hosted a movie night. I am delighted to report that we have just received the final total and funds from the bursar - they raised a staggering £2492.46! En....
COVID-19 Shielding Update - Click here to view this entry

COVID-19 Shielding Update

Tue Jun 23 2020
With the risk of catching coronavirus steadily decreasing, the UK Government yesterday announced changes to the future of the shielding programme. From 6 July those shielding will be able to meet outdoors, in groups of up to six people from outside their household, with social distancing: If you live alone (or are a lone adult with dependent children under 18), you will be able to form a support ....
Super School - Click here to view this entry

Super School

Fri Jun 19 2020
Never a dull moment at Ava's school. Today she met the Head Teachers animals, including a chameleon! Whilst home and online schooling has been a challenge for many, we have been blessed to have an incredible team who have continued to give Ava 1:1 tuition, story time, special visitors and catch-ups with friends. Thank you all for such dedication 💖
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 
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 ....
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

Thu Aug 1 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

Sat Jun 22 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

Wed May 1 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!

Sun Apr 21 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

Fri Mar 29 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....
Happy 5th Re-Birthday Ava! - Click here to view this entry

Happy 5th Re-Birthday Ava!

Thu Mar 28 2019
Today we are celebrating Ava's 5th 'Re-Birthday' - the anniversary of receiving her new DNA. We can't beleive how quickly the time has flown, or how much life would have changed for us in that time. We are thankful for the second chance of life which gene therapy has given her and for the continued friendship of the lovely girls who took time to celebrate with her, even though ....
A new classmate  - Click here to view this entry

A new classmate

Wed Mar 20 2019
Ava's teacher Charlotte and I bought lots of tickets to try and win this gigantic teddy bear for the school on Red Rose Day. We were't lucky. However a few days later it suddenly appeared, it seems the winner didn't want it and decided to donate it to the school! Given how much space it takes up in the classroom, Charlotte isn't sure it was a good idea after all... but of cours....
Justice served - Click here to view this entry

Justice served

Thu Mar 7 2019
Today we won a 4-year battle with the Local Authority over Ava's Educational and Health Care Plan (EHCP). The EHCP system is failing badly and many children are being badly short-changed by their LA's. We sincerely hope that today's result is a victory not just for Ava, but for other families who don't have the stamina or resources to defend the rights of their specia....
Rare Disease Day 2019 - Click here to view this entry

Rare Disease Day 2019

Thu Feb 28 2019
What better way to celebrate Rare Disease Day than great test results from Milan? All good, with small but important improvements in ear and eye nerves. I also attended the annual Genetic Alliance Rare Disease Day reception at the Houses of Parliament, where it was fantastic to meet yet more inspirational people in the rare disease community and those working tirelessly to improve things for all o....
5 year checks in Milan - Click here to view this entry

5 year checks in Milan

Tue Feb 19 2019
We're back in Milan for Ava's 5 year post-transplant checks. We're a little early, since the anniversary in 28th March, however the team here have kindly allowed us to travel early to come during half term, meaning that Ava hasn't missed any school and that we will have current test results to present at our EHCP tribunal in early March. Best of all, it also means that Angelina....
Happy 12th Birthday Ava! - Click here to view this entry

Happy 12th Birthday Ava!

Sat Nov 24 2018
Wishing the happiest of birthday's to the happiest of girls. Have a great day my darling, can't tell you how grateful we are to have you here or how much joy and light you bring into our lives.
Baking day - Click here to view this entry

Baking day

Sun Oct 28 2018
Ava has spent a lovely day baking with Angelina for a charity bake sale at her boarding school. Happy Halloween!
Special Delivery from NZ - Click here to view this entry

Special Delivery from NZ

Sat Oct 20 2018
Ava was thrilled today to receive a parcel of goodies from teaching assistant Miss Katie, who returned to her native New Zealand this summer. As well as an array of delicious looking treats, Katie also sent a $5 note, which features the explorer Sir Edmund Hillary, whom Ava has loved learning about in Geography.
Meet Lulu - Click here to view this entry

Meet Lulu

Tue Oct 9 2018
Ava loved meeting Lulu the Cavapoo today, a delightful Pet Therapy dog who will be visiting Ava's new school every Tuesday. Just one of many wonderful initiatives at this very special school, where Ava couldn't be happier.
4.5 year checks in Milan - Click here to view this entry

4.5 year checks in Milan

Thu Sep 27 2018
All good results at Ava's 4.5 year post-transplant checks in Milan. Ava's enzyme levels are great and all other test results are stable, if not slightly improved. As ever, Ava took the onslaught of examinations in her stride with typical cheerfulness and she has enjoyed her week in Milan visiting our usual haunts between appointments.
Sparkling, as always - Click here to view this entry

Sparkling, as always

Fri Jul 6 2018
The worthy recipient of this year's FHS SPARKLE CUP.
Feed the birds... - Click here to view this entry

Feed the birds...

Thu Jun 28 2018
Congratulations to Year 6 for a spectacular end of year production of Mary Poppins!
Sports Day 2018 - Click here to view this entry

Sports Day 2018

Wed Jun 6 2018
Ava's final Sport's Day of Junior school was a lovely, sunny and happy day. Ava enjoyed cheering on her class mates and they really supported her in the shot put and javelin events, where she won a medal! Well done to everyone :)
Anyone for cake? - Click here to view this entry

Anyone for cake?

Tue May 1 2018
There are definitely perks to missing school because your teaching assistant is sick, including the Godiva Cafe at Harrods, yum.
Loving swimming at 'Love Swimming' - Click here to view this entry

Loving swimming at 'Love Swimming'

Mon Apr 23 2018
Ava can finally reach the floor in our local pool, hurrah! Ava goes to the pool before school twice every week to do exercises recomended by our Physiotherapist and with the help of excellent swimming instructor Musa at Love Swimming. This excercise provides essential movement and weight-bearing for Ava and she has none of the fear of falling over which she has on land due to her lack of balance. ....
A new adventure for Angelina - Click here to view this entry

A new adventure for Angelina

Tue Apr 17 2018
Angelina is off to boarding school! Whilst she is the most fantastic big sister anyone could ask for, its easy to forget how hard it is to be the sibling of someone with a rare disease. Ava's disabilites mean that she requires full-time help and attention and Angelina naturally pitches in constantly and worries a lot about her. When she passed the exam for an outstanding all-girls school in t....
Happy Easter! - Click here to view this entry

Happy Easter!

Sun Apr 1 2018
A lovely Easter egg hunt with Angelina and cousins Milly and Grace. Happy Easter everyone!
Happy 4th Re-birthday Ava! - Click here to view this entry

Happy 4th Re-birthday Ava!

Wed Mar 28 2018
Today we are celebrating the 4-year anniversary of Ava receiving her life-saving new DNA. Eternally grateful to Dr.Biffi and her team for their dedication to MLD and the 2nd chance of life their work has given Ava. Even more poignant to think that several MLD children we met but who sadly weren't treated have passed away since that day.
4 year post-transplant checks - Click here to view this entry

4 year post-transplant checks

Mon Mar 26 2018
Ava's checks in Milan went well. The levels of her new ARSA enzyme are strong and her brain MRI and nerve conduction remain completely stable. Ava's Gross Motor Function is also stable and her IQ score showed an increase of 11 points. Doctors were pleased to see Ava interacting so well and agreed with our sense that her conversation has improved. Another bonus was the fact that I met 2 s....
Thank you - Click here to view this entry

Thank you

Sun Mar 25 2018
Heartfelt thanks to everyone who has generously donated to ArchAngel in memory of this adorable, beautiful little girl Paige Scott, who passed away in November last year. We are full of admiration for the Scott family, who have not only shown immense courage and bravery throughout their difficult MLD journey, but also incredible generosity of spirit in thinking of others at their time of devastati....
Milan again, already! - Click here to view this entry

Milan again, already!

Mon Mar 12 2018
A long overdue update... Ava is doing well. Her mobility challenges remain the same, however her conversation has increased, including her asking more questions, making more observations and even telling jokes! I think this is in part due to the fact that our school have integrated her with lots of other classes whilst her Year 6 peer group were working hard on their 11+ exams and she has thrived ....

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