A Note from Amelia’s Mom
Amelia is 6 years old and was diagnosed with Mucopolysaccharidosis(MPS) in March 2011. She was born a typical child and for the first year nothing strange was noticed about her development. 
When she was two, we felt that her development was lagging because she wasn’t talking or walking, and didn’t behave like normal children.
When she was two, we felt that her development was lagging because she wasn’t talking or walking, and didn’t behave like normal children.
She was diagnosed with Autism and global delays at 2 years and was put into therapies to help her gain skills. She was later diagnosed with MPSIII (also called Sanfilippo syndrome). Through genetic analysis, we soon learned that Amelia has Type A Sanfilippo syndrome, which is the one of the four types of this disorder that on the average progresses the fastest. That was when we understood that all of the seemingly unrelated health and developmental issues were caused by the disorder.
But we understood something else from the diagnosis as well: Amelia had a disease for which there was not now any treatment or any cure. We could expect her to become progressively worse, and to lose her about the time she became a teenager.
Reed and Roy are thrilled to meet Amelia. Amelia.....not so much.
Like many Sanfilippo children, she has never learned to talk. She learned a few words, but at around 3 years old stopped saying even those words. She is losing her ability to walk and soon she will be in a wheelchair permanently. She will lose the ability to eat, swallow and even breathe on her own. We can expect to lose this precious child around her 14th birthday.
A Note from Amelia: You can learn more about me and see lots of pictures by going to my Facebook page Hope for Amelia. See you there!
Here’s a slideshow with some of Amelia’s pictures in it.
You make me smile every time I see you
Amelia , Just letting you know how much you are loved.
You’re beautiful amelia and the world is better having you in it.
Amelia, we’re behind you all the way! Your North Dakota friends.