Wear Blue Day for Ethan

We are raising funds for the incredible MPS Society on behalf of our eldest son Ethan.

This is Ethan. He is our incredible, brave 15 year old son.

At just 2 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 that are life limiting. 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 that break down GAGs in the body and as a result they store these GAGs in every cell causing progressive damage.

There is currently no cure for MPS.

As you can see by his photos, Ethan is an amazing, strong and determined young man. He is full of life, love and laughter and our 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 had numerous surgeries and is due to have many more.

Whilst incredibly difficult to journey through, all of these medical interventions have an extremely positive impact on Ethan's day to day life, enabling him to live a fulfilled life, just like any other child his age.

In all of this Ethan stands defiant. He is aware of his condition but endures treatments, therapies and other medical interventions with such courage. He gets upset and frightened of course but with lots of encouragement from us, and lots of hugs and kisses, he digs deep to find incredible strength from within, helping him to fight forward.

He is the bravest teenager we know and he inspires us every moment of every day. He gives us something to live and fight for and he is our little warrior.

So how can you help Ethan?

We have been running our annual Wear Blue Day campaign for 12 years now, in the hope that we could help fund research privately, and via The MPS Society, to find a cure for MPS.

The MPS Society is and only U.K. charity to support people living with these conditions and so it’s vitally important that we continue to support them in the amazing work they do.

Every penny counts, no matter how big or small the donation.

Please join us on Sunday 15th May in our Wear Blue Day for Ethan event by wearing something blue and posting it to the event page on Facebook.

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

Katrina, Kevin, Ethan, Kaitlyn & Cohen xxxxx