NORTH CAROLINA -- About an hour away from the Haywoods, in Dallas, North Carolina, another family dealing with childhood Alzheimer's as well.
“She was born the perfect child, everything was perfect,” said Wendy Ferguson, Abby’s mother.
Wendy and John Ferguson cherish the time they have left with their 13-year-old daughter, Abby.
“I mean, we know what our future holds. We try to live in the moment and enjoy what we have,” said Wendy.
One in 70,000 children are born with the disease. There are only 36 known cases in North Carolina.
Abby was diagnosed in first grade after testing poorly on an IQ test. It led to several neurological tests that eventually revealed Sanfilippo Syndrome. She’s 13, an age when most kids suffering from it are in severe physical and mental decline.
“She's not your typical Sanfilippo child, and we're really blessed because we’ve been able to get to know her or her personality,” said Wendy Ferguson.
The day we were with the family, Abby was bouncing around on a trampoline.
“You know we get to see her laugh and talk and have fun. So we're thankful for that part of it,” said John Ferguson.
Abby is helping other families dealing with this disease.
“She's actually given hope to other families, they look at her and they know maybe their child will, you know, be the same,” said Wendy Ferguson.
Both families hope advancements in medical science can give both their daughters more good times.
“Fifteen years ago there was absolutely nothing I could do but counsel families and help the family deal with this progressive disorder. Now we’re talking about intervention and treatment, so it’s a huge step forward,” said Dr. Joseph Muenzer, UNC School of Medicine.
Groundbreaking research is being pioneered here in North Carolina at Duke University Hospital and UNC School of Medicine. That could help add years to the lives of kids living with Sanfilippo Syndrome.
“There is hope for families,” said Dr. Muenzer. “I'm at a point where I’m getting more and more involved in doing clinical trials. In the next few years we will hopefully keep advancing the field to the point where in five or 10 years, families come to me and I say 'Here, pick this treatment, this will work best for your child.'”
That hope is all these families have.
“To me you can't live without hope. You can't give up. Even if this thing does get her, you can’t give up hope that we can cure this disease for the children past her, for the ones coming up,” said John Ferguson.
Meanwhile, the Haywoods continue to make a box of memories for Sadie.
“Our ultimate hope is when Sadie turns 18 she’ll be able to go through this box and open these cards and letters and see what she means to people,” said John Haywood.
Hope, with such an uncertain future. "Hope is a big word and it's a hard word. But we know that whatever happens she's perfect and we'll love her forever, and she's always our little girl,” said Ashley Haywood
If you’d like to learn more about their stories, or help, here are the websites for Sadie and Abby.
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