National MPS Awareness Day

Today is National MPS Awareness Day.  For those of you not familiar with my daughter's disease, she has Sanfilippo Syndrome, which is also known as MPS III.  It is a rare, inherited disease that is fatal and for which there is currently no cure.

In my experience, parents of children with MPS usually find some comfort in raising awareness of the disease.  Some families use this awareness to raise money for research.  (Our family hosted a fundraiser for research a year ago at Claypit Hill School, where my daughter is a student.)  Some parents go further, advocating for changes in FDA policy for rare diseases, and even scouring the vast medical field looking for an application that might benefit their child.  And many MPS parents write.  Most of this writing takes the form of blogging.  But not my friend, Matt.

Matt is a dad of two children, both of whom have Sanfilippo Syndrome.  He writes a lot, but his writing takes the form of fiction--well, maybe inspired by actual events!  He has written a novel for readers 9-12 years old that was released today in honor of National MPS Awareness Day.  "The Strange Tale of Ben Beesley" is an adventure of sorts between a fly named Ben Beesley and two orphaned flies named after Matt's children, Waverly and Oliver. 

While the book is not about Sanfilippo Syndrome, it does a good job of describing the consequences of the disease in a way that can be understood by these young readers.  I am looking forward to reading it with my son.  It may be a very useful tool in our discussions of what is happening to his sister.  I think it could be a tool for other young children that know my daughter and wonder about her disabilities. 

The best part of Matt's book is that all proceeds are being donated to the National MPS Society to help find a cure for Sanfilippo Syndrome.  If you want to share a good story with your kids and help a good cause in the process, you can follow the link below:

http://benbeesleybook.com/