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ACE

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The image below shows our Highland Fling wallpaper in the bedroom of Anouk Howes (also shown below) who is a very special daughter of great friends close to Juliet. Anouk was diagnosed with SMA in October 2019, which is a condition with a mutated or deleted survival motor neurone 1 (SMN1) gene which doesn’t produce the SMN protein to maintain the survival of motor neurones. Without a proper level of SMN protein, motor neurones in the spinal cord will be lost, preventing the body’s muscle from receiving signals from the brain. This then leads to progressive muscle weakness and wasting.

Anouk was just 18 months old when she was diagnosed and was deteriorating so fast. In the same month, NICE approved Spinraza in the UK on the NHS which is a massive breakthrough for anyone suffering with this condition. This treatment has given them hope and strength to get through this journey and Anouk’s determination is already shining through like a big bright star.

 

She now has an injection every 4 months for the rest of her life to help increase the ability of the SMN2 gene. She is one brave, strong and determined little person and we are all so proud of her.

Anouk’s wonderfully brave parents, Mike and Sophie Howes, have set up ACE SMA, to raise awareness, help fund research into a cure and to make sure that anyone with SMA is given the opportunity to exercise. What they have already achieved in a year is just incredible and Anouk’s progress shows their initiative works and has created so much hope for the future of all those suffering with SMA. As you can see in the images and videos, she is moving in ways that we never thought possible when she was diagnosed. It proves there is so much hope for anyone suffering from this disease, that intensive physio and exercise initiated by ACE along with the medical support from the NHS can make a huge difference.

This whole story led to an idea to launch a project in December 2020 that was a big success, thanks to everyone’s incredible support. For the first 12 days of December, Juliet painted a watercolour picture a day, each drawing was A4 and available to buy through Instagram, with 50% of proceeds going to ACE SMA. All 12 paintings sold and £900 was raised for ACE and has gone towards more research and to find a cure.

 

Juliet at her desk ready to create the first painting for ACE in December 2020. Please scroll down to see images and the matching time-lapse video for each painting.

 

Juliet is now working on a special wallpaper for ACE and again, a percentage of proceeds from sales will go towards the charity. Keep your eyes peeled for more to come…