Wear Blue Day for Ethan - 10th Anniversary
To celebrate our 10th Wear Blue Day for Ethan, we are raising funds for the incredible MPS Society.
This is Ethan. He is our incredible, brave 13 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, including his 3rd double knee surgery next month.
We believe all of these medical interventions will have a 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 mildly aware of his condition but endures treatments, therapies and other medical interventions with such courage. He gets upset and frightened of course but with a little 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 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 our annual Wear Blue Day campaign for 10 years now, in the hope that we could help fund research privately, and via The MPS Society, to find a cure for MPS.
This year also marks the 40th Anniversary of The MPS Society and so it’s vitally important that we continue to support them in the amazing work they do.
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.
Every penny counts, no matter how big or small the donation.
Thank you for taking the time to read this and for all your support.
Katrina, Kevin, Ethan, Kaitlyn & Cohen xxxxx
This is Ethan. He is our incredible, brave 13 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, including his 3rd double knee surgery next month.
We believe all of these medical interventions will have a 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 mildly aware of his condition but endures treatments, therapies and other medical interventions with such courage. He gets upset and frightened of course but with a little 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 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 our annual Wear Blue Day campaign for 10 years now, in the hope that we could help fund research privately, and via The MPS Society, to find a cure for MPS.
This year also marks the 40th Anniversary of The MPS Society and so it’s vitally important that we continue to support them in the amazing work they do.
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.
Every penny counts, no matter how big or small the donation.
Thank you for taking the time to read this and for all your support.
Katrina, Kevin, Ethan, Kaitlyn & Cohen xxxxx
Organizer
Katrina Fanneran
Organizer
Society for Mucopolysaccharide Diseases
Beneficiary