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

Happy 5th Re-Birthday Ava!

Mon Aug 12 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

Mon Aug 12 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....

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