Ethan with his mum Katrina

Twelve-year-old Ethan from Canterbury, Kent has raised almost £4,000 for the MPS Society and Great Ormond Street Hospital (GOSH) by walking over 100km in the month leading up to this week’s MPS Society Wear it Blue Day – part of the charity’s awareness week.

100km is the exact distance between where Ethan lives in Canterbury and GOSH where he receives regular treatment for the rare and incurable genetic disease Mucopolysaccharidosis type VI also known as Maroteaux-Lamy Syndrome.

Ethan’s family has raised over £40,000 over the past nine years, starting from the very first Wear Blue day which was later adopted by the charity as Wear it Blue. The family are currently trying to raise the £15,000 needed to take him to Italy to take part in a ground breaking trial which is searching for a cure.

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 glycosaminoglycans (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.

Ethan’s mum Katrina, 41, said: “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 limbs, heart, spine, skeleton, neck, airway, eyes and ears as well as having limited mobility and a shortened stature. 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.

“If it wasn’t for both the MPS Society, their support and research funding, and GOSH and the weekly treatment Ethan has, his life, health and future would be very different.

Ethan stands defiant

“In all of this Ethan stands defiant. He is mildly aware of his condition but endures treatments, surgeries and other medical interventions with such courage. He gets upset and frightened of course but with lots of encouragement, love and reassurance from his mum, dad and his little sister and brother, he soon comes round. He is the bravest 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.”

“A clinical trial is taking place in Italy and the medical research team have invited Ethan out there to be screened to take part in this trial with a view to potentially include him in the 2nd phase of the trial. Our dream of saving Ethan from this disease is within our reach but we will have to fund a four to six-month period in Italy, as well as regular periods out there over a number of years following the trial, in order to give him this chance and we need financial support to do this.

Every penny counts

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

“We have a very rare chance to cure our son’s rare disease and we are one step closer to giving him the future we have only been able to dream about until now.

“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 facebook.com/events/s/wear-blue-day-for-ethan-2020/284743262546571/?ti=icl

By Ed

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