ACE SMA
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 with SMA 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.
Anouk’s wonderfully brave parents, Mike and Sophie Howes, have since 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 achieved already in such a short space of time is just incredible and Anouk’s progress shows their initiative works.
As you can see in the video above, she is moving in ways that we never thought would be 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 inspiring story led to an idea to launch a project where Juliet painted a watercolour picture a day for December. Each drawing was A4 and available to buy through auction on Instagram, with 100% of proceeds going to ACE SMA. All 12 paintings sold and £4,361 was raised for ACE. The money has gone towards more research and to help find a cure.
Below is a selection of paintings Juliet created for this cause which will soon be available to buy from her Limited Edition Prints page. 50% of proceeds of each print sold, will continue to go towards ACE.
