This is my son Ethan. He is just 7 years old. At just 2 years and 10 months old, he was diagnosed with a rare genetic disease called Mucopolysaccharidosis Type VI or MPS 6 also known as Maroteaux-Lamy Syndrome.

MPS and related diseases are progressive, degenerative syndromes which are ultimately terminal. Most children are born seemingly normal but symptoms generally start to show between the ages of 2 and 4. MPS sufferers are missing specific enzymes which break down GAGs in the body and as a result they store these GAGs in every cell causing progressive damage and ultimately a shortened lifespan. There is currently no cure for MPS.

As you can see by his photos, Ethan is an amazing, strong and beautiful little boy. He is full of life, love and laughter and my fight is to keep him that way for as long as possible. He is under the lifetime care of Great Ormond Street Hospital and undergoes a weekly treatment of Enzyme Replacement Therapy by intravenous infusion which we hope will at least slow down the progression of this disease. He already has damage to his liver, heart, spine, skeleton, neck, airway, eyes and ears as well as having multiple hernias. He has already had numerous surgeries and is due to have more, all of which should improve his day to day quality of life.

In all of this Ethan stands defiant. He is unaware of his condition but endures weekly and sometimes daily therapies like they are a piece of cake. He gets upset and frightened of course but a little encouragement from Mummy and lots of hugs and kisses and he soon comes round. He is the bravest little boy and he inspires me every moment of every day. He gives me something to live and fight for and he is my little soldier.

So how can you help Ethan? Simple. WEAR BLUE! I want to get as many people as possible to wear blue, be it clothes, shoes, eyeshadow or simply a blue ribbon on May 15th, MPS Awareness Day so as to raise the profile for all MPS diseases and sufferers. My hope is that all who can, will donate to the MPS Society, through Ethan's page which will help other families like Ethan and I and more importantly it will help fund research in the hope of finding a cure.

Thank you for taking the time to read this and for all your support.

xxxx