Ethan's 100km

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 beautiful little boy. 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. We believe all of these medical interventions will have a positive impact on Ethan's day to day life.

In all of this Ethan stands defiant. He is mildly aware of his condition but endures treatments, therapies and other medical interventions with such courage. He is the bravest little boy 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 an annual Wear Blue Day campaign on May 15th (MPS Awareness Day) for 8 years now, in the hope that we could help fund research privately and via The MPS Society to find a cure and we are almost there.

This year however, Ethan has decided that he would like to complete his own challenge, ahead of Wear Blue Day for Ethan, by walking/cycling 100km in the month leading up May 15th. 100km works out as 62 miles which happens to be the exact distance between our home and Great Ormond Street Hospital (GOSH) and so he would like to raise £1000 each for GOSH and The MPS Society. His hope is to raise funds and awareness for the amazing care he receives from all of his teams at GOSH, as well as raise awareness for all the other incredible MPS Warriors out there, supported by The MPS Society. 

Every penny counts, no matter how big or small and we are so utterly grateful for your generosity. 

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

Ethan & his family of sidekicks (Katrina, Kevin, Kaitlyn & Cohen)
xxxxx
www.facebook.com/hope4ethan


Please join us on Friday 15th May in our Wear Blue Day for Ethan event by wearing something blue and posting it to the event page on Facebook which will go live very soon.
Click below to watch a short video of Ethan's story from last year. 
Our Wear Blue Day awareness video