She’s a healthy 2-year-old, but her parents brace for onset of ‘childhood Alzheimer’s’

At her second birthday, her mom said Sadie Haywood is a “smart, happy and healthy toddler.”

But Thursday’s celebration with pizza and cupcakes in Albemarle was bittersweet. Sadie was born with Sanfilippo syndrome, which is also known by a chilling second name: “childhood Alzheimer’s.” The rare disease, which has no treatment and no cure, will claim more of her with each passing year.

At 2, Ashley Haywood said, her sandy-haired little girl already knows most of the alphabet and can read her name. Unless she somehow gets effective treatment, she will descend into dementia, a wheelchair and a feeding tube, and will die in her teens.

“We know she is getting ever closer to the age when the disease begins to take hold,” she said. “The disease is working on her every second, but children really start falling behind at age 2 and regressing by age 3.”

The genetic condition affects 1 in 70,000 children. Their life expectancy is about 15 years.

Haywood, 31, a clinical research coordinator, and her husband Jason, 32, pray their only child will be admitted to a clinical trial of new treatments, although they know trials can accept only a few children at a time. They’ve created a Facebook page, Saving Sadie Rae, to raise money for research into a cure.

They also started assembling a time capsule for their toddler. They hope Sadie will be able to open a trove of letters, videos and cards when she turns 18 and know that her young life touched others.

“Your poppy carried you into the room and I’ll never forget the way your big blue eyes looked at me. It was almost as if you were looking through to my soul and I was slightly afraid and in awe. How was it possible for an 8 month old to have so much depth?” – Aunt Jenna

“You have been the light of my eyes since the day you were brought in to the world. That quirky little smile melts my heart every time I see it!” – Papa

Children with Sanfillipo syndrome lack an enzyme that breaks down natural cellular waste, clogging their cells with toxins. Brain cells are most damaged. Symptoms usually appear between 2 and 6 with speech problems, developmental delays, behavioral problems and extreme hyperactivity, the Cure Sanfillipo Foundation says. As dementia progresses, children lose their ability to speak, walk and eat by mouth.

The nonprofit foundation, based in Columbia, S.C., raises money for research and public awareness of the disease. The Haywoods hope to raise $10,000 for the group.

“There’s no treatment currently, so the only hope is the research,” Ashley Haywood said. “Getting more research done so they do find a cure, that’s the main thing. We have to have more funding to keep the research going.”

A distant cousin of Jason Haywood died of Sanfilippo syndrome at 14, and he knew he carried the recessive gene for the disease. Ashley Haywood had genetic counseling before her pregnancy but says she was told the gene was so rare it was unlikely to occur in her too. If both parents are carriers, there’s a 25 percent chance their child will have the disease.

At birth, Sadie had to be airlifted from Stanly County to Levine Children’s Hospital in Charlotte because she wasn’t breathing well on her own. Her head was also growing larger than normal, a condition traced to a brain hemorrhage. Doctors diagnosed Sanfilippo syndrome when she was 3 months old.

“I think I was in shock for at least a week,” Haywood said. “I didn’t want to believe it.”

Sadie spent 73 days in Levine’s neonatal intensive care unit. By her second birthday Thursday, she had endured seven surgeries, including three on her brain, but came through them with startling resilience.

“She’s a tough little cookie,” Haywood said. “She’s very happy, always smiling, and even with her brain surgery she bounced back like it was nothing.”

That’s the way those who love Sadie now will remember her.

“You've tugged at my heart for 2 years now and made me feel things I never imagined and your sweet happy attitude always makes me smile! You are a blessing to everyone who meets you and all who see your happy little smile. Looking forward to all your birthdays including your eighteenth when you open your time capsule! – Poppy

This story was originally published March 9, 2018 at 8:15 AM with the headline "She’s a healthy 2-year-old, but her parents brace for onset of ‘childhood Alzheimer’s’."