Mea is a loving and happy 5 year old girl whose smile will light 

up a room. Mea has always been the "sick kid" but the doctors 

could never figure out what was causing it. After years of trying

 new medications, surgeries, and tests, Mea was diagnosed with 

Sanfilippo Type A. Sanfilippo is also known as MPSIII, Type A means

 Mea has the fastest progressing type of Sanfilippo. Sanfilippo is 

considered rare, with an occurrence of 1 in every 70,000 births. 

Sanfilippo syndrome is metabolism disorder passed down through families. 

It makes the body unable to properly break down long chains of sugar. 

There is no cure or treatment available.  Unlike many other forms of MPS,

 symptoms often appear after the first year of life. A decline in learning

 ability typically occurs between ages 2 and 6. The child may have normal 

growth during the first few years, but final height is below average. 

Delayed development is followed by deteriorating mental status. 

Every function of the body will fail eventually leading to death in the 

early pre teen age years depending on the severity. Mea began to lose her

 hearing first at the age of 2. Mea has now lost the ability to hear 

clearly and speak. She currently struggles with bowel functions, breathing

 issues, and significant cognitive regression. Mea does not understand that

 she is "sick" or different in any way. We continue to fight this battle 

trying to see every doctor that might be able to help Mea. We travel on a

 monthly basis to Syracuse, recently New York City and continue to look 

for the special doctors that Mea needs.