Sadie's parents were crushed when their beautiful baby daughter was diagnosed with a terminal disease at three months, but they are determined to save her.
The symptoms of Sanfilippo syndrome can vary significantly depending on the subtype of the disease. Children affected by this condition typically do not display any symptoms at the time of birth, according to Boston's Children's Hospital. Features of MPS IIIA typically appear earlier in life and progress more rapidly than symptoms in other Sanfilippo syndrome subtypes.
"She also developed hydrocephalus and had to get a shunt implanted in her brain. We knew a distant relative had Sanfilippo syndrome so we had Sadie tested just to rule this out but sadly the test came back positive," Haywood said."Sadie's story is unusual. Most children with Sanfilippo are not diagnosed until they are a few years old. Many doctors have never heard of this disease. We had to push to get Sadie tested at three months old.
"Rare diseases are not as profitable for pharma companies so family support is key. We started sharing Sadie's story on social media and with media outlets and we hosted numerous fundraisers to support the Cure Sanfilippo Foundation. She is a strong little fighter. Her parents never knew if she would talk or walk, and her cognitive abilities turned out to be surprising:"She could say all the ABCs and count to ten before she was two. Even if she's spending all day in a hospital bed, she's pretty happy," Haywood said.
The Haywood family has since reached out to many other companies to share Sadie's success and ask them to buy the treatment, but according to Sadie's mom, no company did because it is very expensive and difficult to produce. There is currently no FDA-approved treatment or cure for Sanfilippo, but according to O'Neill, there is research happening and there is hope.
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