Leo and Seamus are my twin 10 year old boys. They are adorable, joyful, and the sweetest little boys you can imagine. They are also dying of a rare disease called Muccopolysaccharidosis (MPS). They can no longer walk on their own, talk, or eat by mouth. Seamus has seizures and dystonia (a movement disorder) and also has a tracheostomy, because his esophagus won’t stay open to allow him to breathe. Leo also has dystonia.
There is no cure for MPS, and the average life span for the type Leo and Seamus have (Sanfilippo 3A) is 13 years. Some live longer, some are lost even earlier. Unfortunately, due to it’s rare nature, there is not great earning potential for companies who would have the resources to research for a cure. The funding for MPS research is almost entirely provided by the families of those who suffer and donations received through fundraisers. This is why 50% of this site’s donations will go to the MPS society, to help find a cure for my children and all the other children affected by this disease. If you prefer, you can make a donation directly to the MPS society via the link below.
Check out the following links to get more info on Leo and Seamus and MPS: