Instead, this year Ethan has started his own fundraising challenge to complete 100km in the month up to WEAR BLUE DAY for ETHAN on May 15th and raise £1k each for Great Ormond Street Hospital (GOSH) and The MPS Society. 100km works out as 62 miles which happens to be the exact distance between our house and GOSH, where he receives all his care, and so he wanted to raise money and awareness for all the amazing work they do at GOSH to care for him and others as well as The MPS Society and all those living with MPS. Please visit his page for more info, updates and WWW.GOFUNDME.COM/ETHANS100KM
We will come back to this fundraiser next year, when hopefully we will be able to work towards Phase 2 of the clinical trial in Italy.
Thank you for your continued support.
WE NEED YOUR SUPPORT TO HELP US RAISE FUNDS TOWARDS A CLINICAL TRIAL FOR A GENE THERAPY CURE FOR MPS 6 IN ITALY.
This is Ethan. He is our incredible, brave 12 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 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 gets upset and frightened of course but a little encouragement from Mummy, Daddy and his little sister and brother and lots of hugs and kisses and he soon comes round. 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 soldier.
So how can you help Ethan? We have been running an annual Wear Blue Day campaign 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. Right now 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 4 - 6 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, 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.
Thank you for taking the time to read this and for all your support.
Katrina, Kevin, Ethan, Kaitlyn & Cohen
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.
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