NORTH CAROLINA -- The birth of a child is a time filled with laughter and joy as families begin making a lifetime of memories. But for one family in Albemarle, their youngest daughter’s precious moments have turned into a race against time before those fresh memories begin to fade. To understand, imagine Alzheimer’s disease, but in a child.

“We try to make good memories and do lots of things,” said Ashley Haywood. “We don't know when it's going to happen and we don't think about it. We try not to pay attention. You live in the moment and you see her happy and playing.”

Haywood’s daughter, Sadie Rae, is a vivacious and lively 2 year old. But the family is facing an uncertain future.

“The milestones are the hardest part of this,” said Sadie’s father, Jason Haywood.

“Is Sadie going to get to do all the things everyone else gets to experience? Am I going to walk down the aisle? She’s special, she really is.”

Sadie is living with Sanfilippo Syndrome. It’s a rare genetic disease, also known by its chilling second name, childhood Alzheimer’s disease.


The medical definition of Sanfilippo Syndrome from the U.S. National Library of Medicine: 

            (Mucopolysaccharidosis – MPS III)

A progressive disorder that primarily affects the brain and spinal cord (central nervous system). Other body systems can also be involved.People with MPS III generally do not display any features of the condition at birth, but they begin to show signs and symptoms of the disorder during early childhood. Affected children often initially have delayed speech and behavior problems. They may become restless, destructive, anxious, or aggressive, and some display features of autism spectrum disorder, which is a condition characterized by difficulty with social interactions and communication. Sleep disturbances are also very common in children with MPS III. This condition causes progressive intellectual disability and the loss of previously acquired skills (developmental regression). In later stages of the disorder, people with MPS III may develop seizures and movement disorders.The physical features of MPS III are less pronounced than those of other types of mucopolysaccharidosis. Individuals with MPS III typically have mildly "coarse" facial features, a large head (macrocephaly), a slightly enlarged liver (mild hepatomegaly), and a soft out-pouching around the belly-button (umbilical hernia) or lower abdomen (inguinal hernia). Some people with MPS III have short stature, joint stiffness, or mild dysostosis multiplex, which refers to multiple skeletal abnormalities seen on x-ray. Affected individuals often experience chronic diarrhea and recurrent upper respiratory and ear infections. People with MPS III may also have hearing loss and vision problems.MPS III is divided into types IIIA, IIIB, IIIC, and IIID, which are distinguished by their genetic cause. The different types of MPS III have similar signs and symptoms, although the features of MPS IIIA typically appear earlier in life and progress more rapidly. People with MPS III usually live into adolescence or early adulthood.
           


“Usually memory is the first to go. And then slowly they'll lose the ability to walk, to want to go to the restroom, to feed themselves, to they'll be bedridden or in a wheelchair. The average age for these children is like 15,” said Ashley Haywood.

(CONTINUE BY VIEWING PART 2 HERE)

If you’d like to learn more about their stories, or help, here are the websites for Sadie and Abby.