Hi friends, family and supporters. This is the story of my son Ethan. He is 9 years old and when he was of 2 years old he was diagonsed with a rare genetic disease called Mucopolysaccharidosis type VI or MPS 6.

MPS diseases are progessive degenerative syndromes which are ultimately terminal. Most children are born seemingly normal but symptoms generally start to show between the ages of 2-4. MPS sufferers are missing a 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.

At this moment in time there is no cure for MPS.

Ethan is currently under the care of Great Ormond Street Hospital and undergoes weekly treatment of Enzyme Replacement Therapy, which we hope will slow down his disease. Ethan has already had numerous surgeries and his condition has already affected his liver, heart, spine, neck, airway, ears, eyes and much more.

Even with all of these Ethan is a happy little boy and loves life, he shows not only myself but everyone he meets that life is too short and you should always be happy. Ethan loves his best friend Storm the dog and his new baby sister and always wants to help, wherever he can.

How you can help us.

Right now there is a clinical trial taking place in Italy to find a cure for MPS and the medical research team have invited Ethan out there to be screened to potentially take part in this trial next year. If Ethan gets accepted to go to Italy for the full treatment then he will have to remain in Italy for serveral months whilst he is monitored.

The cure is within reach and we would like to raise £10,000 for his stay in Italy and support him throughout the treatment. Any money left over will go towards MPS society who fundraise tirelessly for not only Ethan but other MPS conditions.

Thank you so much for reading

John, Rachael, Ethan, Maddie and Storm xx