Every May Cpl turns blue for one day to support our colleague Libby Kelly’s son Max who has the rare and incurable degenerative disease Hunter Syndrome (also known as MPSII).
To raise awareness and much-needed funds, we hosted a breakfast morning in the Cpl Dublin Canteen, 24 May 2019.
What is MPS (Hunter Syndrome)?
Hunter Syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and affects less than 2,000 boys worldwide.
Those with Hunter Syndrome have a defect in the gene that normally causes the body to make the enzyme iduronate-2-sulfatase (I2S.) This leads to progressive damage throughout the entire body.
Most boys with Hunter Syndrome continue to develop physically and cognitively until between the ages 2 and 5 and then begin regressing. These boys gradually lose the ability to talk, walk and eat. Most do not live to see their teen years.
Max was diagnosed with Hunter Syndrome when he was just a year old. Hunter Syndrome is an ultra-rare genetic disease that is progressively debilitating, life-limiting and without a cure.
Most do not live to see their teen years due to the progressive damage caused to their body. Approximately 20% of those affected by Hunter Syndrome do not suffer cognitive impairments or regression and may have normal intelligence but a continuum of physical symptoms.
Each week Max undergoes a 5 hour IV infusion of a synthetic enzyme which helps to ameliorate some aspects of the disease but it is not a cure. As he gets older the impact of the disease is taking its toll more and more on him physically and emotionally. We are closer than ever to getting a cure for Max but the trial (details below) needs more funds.
Some of the Cpl Northern Ireland team showing their support.
How you can help
There is a Gene Therapy trial on the horizon but it needs funding of $2.5 million to get it off the ground. Together families with children with MPS have tackled that goal and have reached the point where a potential cure is ready and waiting with one obstacle: funding it.
So far worldwide $2.35 million has been raised for the first gene therapy clinical trial for the boys. We are nearly there but need more help! See projectalive.org for further information or to make a much-needed donation.
Thank you for your continued support of Libby & Max. #CplGivingBack #MPSAwareness #EndHunterSyndrome