Sadie Rae was diagnosed with Sanfilippo Syndrome, an incredibly rare and fatal neurodegenerative disease

By Maria Yagoda
September 27, 2016 04:55 AM
Anna Tenne Photography

Sadie Rae Haywood is much like your average 6-month-old baby, if not a bit gigglier.

She loves her parents (and getting spoiled by her grandparents). She gleefully speaks in gibberish. She was born at 37.5 weeks after a healthy pregnancy – and looks precious in a bow.

But Jason and Ashley Haywood, a couple from North Carolina, know that their daughter is up against impossible odds; at 3 months old, their baby girl was diagnosed with Sanfilippo Syndrome, an incredibly rare neurodegenerative disease that is typically fatal before a child’s teenage years. When they received that phone call from the hospital, Ashley and Jason’s worst fear had become a reality.

“She had had all these other issues, and we knew she was due for a win,” Jason, 30, tells PEOPLE. “We were in a state of shock for several weeks. I don’t know that we’ve completely accepted it yet.”

The moment she was born, Sadie Rae experienced a host of medical difficulties, from breathing issues to a brain bleed. Jason had a relative with Sanfilippo, too, so the possibility that Sadie Rae had it was always a lurking fear.

After receiving the official diagnosis on June 27 (Sadie Rae was born on March 8), Jason and Ashley kicked into action mode, meeting with couples who also had children with Sanfilippo, aged 3 to 14.

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Kids tend to start showing symptoms – like hyperactivity, or difficulty speaking – around 5, and as the disease progresses, they often need a wheelchair or lose the ability to speak at all or feed themselves. Ten-year-olds with the disease tend to require round-the-clock care.

“We saw what the disease does to these kids. It was eye-opening. Sadie Rae is not symptomatic right now, so it really hasn’t registered because of that,” Ashley says, with Jason adding, “It’s very hard to accept that our perfect little baby girl we are holding in our hands – that in a few years, she could develop that way.”

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The Haymans started researching the disorder and how they could raise awareness for a disease that affects so few children – they created a Facebook page, a web page and a GoFundMe to help cover Sadie Rae’s medical bills. As there’s no established course of treatment, their only hope is getting their daughter into a clinical trial. “She would be kind of like a guinea pig, but it’s our only option,” Ashley says.

Once symptoms start presenting, the disease will progress rapidly, so the two parents feel like they’re fighting a race against the clock to ensure Sadie Rae has a future just like any other kid.

“We want her to have a future as normal as possible,” Ashley says. “We want her to experience all the things we experienced growing up. We want her to go to prom, get her driver’s license, have her daddy walk her down the aisle – all those cliché things.”

Despite the chaos of her circumstances, Sadie Rae is nothing but smiles as she approaches 7 months.

“She is the happiest baby you’d ever meet. She smiles all day long. Her grandparents are infatuated with her,” Jason says.

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“She likes to talk and gibber-jabber. If you’re not paying attention to her, she’ll squeal until you look at her,” Ashley says. “She’s spoiled rotten right now, and that’s completely our fault.”