Archived Entries from 2016 - 2017

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Check-up time in Milan - Click here to view this entry

Check-up time in Milan

Wed Sep 20 2017
We are back in Milan for Ava's 3.5 year post-transplant assessment. The schedule is less punishing than usual, since now we are past the 3 year mark so some follow-up visits will be less invasive. This time Ava has only had blood tests, EEG, gross motor function and neuropsychometric assessments. No brain scan, lumbar puncture, electric shocks or ear and eye nerve tests, which is quite a reli....
ArchAngel Family Day - Click here to view this entry

ArchAngel Family Day

Fri Aug 18 2017
Yesterday ArchAngel hosted a special day for UK MLD families to come together to share their experience, friendship and support. Situated at a lovely country house hotel in Milton Keynes, it was wonderful to see so many brave, beautiful children, their doting siblings and charming, courageous parents. Special thanks to the ArchAngel trustees for giving up their holiday time to organise such a grea....
Get Well Soon Ava - Click here to view this entry

Get Well Soon Ava

Wed Jul 26 2017
Today our brave girl Ava had her gall bladder removed. This was a precautionary measure since she had developed polyps, which can prove to be pre-cancerous in some MLD patients. We were not willing to take any risks and decided to err on the side of caution since Ava already has enough to deal with. After an anxious debate about anaesthesia, since certain types have been known to cause disease pro....
RIP Grandma Sheila - Click here to view this entry

RIP Grandma Sheila

Tue Jul 25 2017
With heavy hearts we must share the desperately sad news that Richard's Mum, Ava and Angelina's beloved Grandma, passed away on Saturday night, following a courageous battle against cancer. Sheila was the kindest person imaginable and would do absolutely anything for her family and friends. We will never forget her dedication and selflessness through Ava's transplant, travelling bac....
Summer is here! - Click here to view this entry

Summer is here!

Tue Jul 11 2017
It's quite remiss of me not to post an update in such a long time, for which I apologise.  For the past few months we have been through a challenging process of trial and error with NHS therapy (the NHS want to convince us that their community therapists are as competent and experienced as those at the specialist neurological rehab unit Ava has attended for 2 years). Ava has struggled wi....
GOOD results - Click here to view this entry

GOOD results

Mon Feb 27 2017
We are now back home after a busy week of testing in Milan. Following numerous blood tests, scans and X-rays, Ava also had a 3 hour neuro-psychometric assessment and a lengthy Gross Motor Function assessment. Although some of the results are not in (including bone marrow and cerebrospinal fluid, which take several months to culture), the doctors are very pleased with Ava's progress. It seems ....
Milan again - Click here to view this entry

Milan again

Tue Feb 21 2017
After a nasty cold and a quiet half term recouperating in the country, Ava and I are currently back in Milan. We are here for Ava's 3 year post-transplant review, which seems quite incredible. We are actually a month early (the anniversary is 28th March), however it is helpful for the hospital to have Ava's data included in the application for the Gene Therapy license, so we are happy to....
Happy new year - Click here to view this entry

Happy new year

Mon Jan 23 2017
Happy new year to all of you. December went past in the blink of an eye. It has just occurred to me that I haven't posted anything in ages. As we now have an Instagram account (@archangelmldtrust) it's easy to forget to post on the blog when you are regularly posting pictures. Sorry for those of you who don't follow Instagram. We had a super Christmas in the country and it was ....
Happy 10th Birthday Ava! - Click here to view this entry

Happy 10th Birthday Ava!

Sun Nov 27 2016
Ava returned to school to find that she had a new teaching assistant, Miss Katie, which has hopefully been a positive step forward. Katie has a good attitude and Ava seems to really like her. She doesn't yet know how to physically handle Ava properly, which means that Ava is still too sedentary during the day, however she is keen to learn from Ava's therapists and is trying her best to f....
We're in the Magic Kingdom! - Click here to view this entry

We're in the Magic Kingdom!

Fri Oct 28 2016
There is still no sign of our test results from Switzerland, but we are travelling again, this time spending half term in Disneyland Florida! The girls have been desperate to come here for years and we thought now was a good time, especially  considering that Ava's mobility skills could worsen further. Although the trip is an expensive one, the happiness and excitement it has brought is ....

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