Cpl was decked out in blue today to create awareness for MPS. MPS is a cause with particular meaning for Cpl and we have been painting our offices blue for the last four years. We do this to help our colleague Libby Kelly, whose son Max was diagnosed 9 years ago.
MPS is a family of 7 diseases which cause progressive damage throughout the body, including the heart, bones, joints, respiratory system, brain and central nervous system. It is a very serious and ultimately fatal disease with most MPS sufferers regressing between 2 and 5 years old and failing to reach their teens. Max suffers from MPS II or Hunter Syndrome. Each week Max undergoes a 8 hour IV infusion of a synthetic enzyme which helps to alleviate some aspects of the disease but there is no cure. He is doing well right now, however, endures multiple procedures, tests, operations and hospital appointments to help manage the course of the disease.
A cure is desperately needed but as the condition is so rare, there is little research focused on the disease. The rarity of the drug means that drug companies aren't allocating enough funds towards finding a cure, and without funding, little can be achieved. Libby continues to raise awareness in the hope that it will lead to increased interest and knowledge about the disease and ultimately a cure.
Awareness breeds interest, interest breeds research and research will breed a cure for Max and those affected by MPS.
Find out how you can help atprojectalive.org/hunter-syndrome