this mom was (falsely) accused of faking her daughter's sanfilippo syndrome diagnosis for attention and sympathy on social media

“My Tik Tok was off the chart with hate comments, I just couldn’t believe it. People would say, ‘You’re lying, Alivia doesn’t have Sanfilippo, you’re just exploiting her for attention' "

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Texas mom Ashley Funke’s daughter Alivia (now 13 years old) displayed an odd series of medical diagnoses starting very early on in her life. First it was Arthritis at age 3, then Intellectual Disability at 4, and even autoimmune Hepatitis - a liver disease - at age 7.  Her mind went to a potential Autism diagnosis, but her mama gut was telling her otherwise – there was definitely something else going on here, and Ashley was resolutely determined to keep digging. In fact, as recently as last year, Ashley even took Alivia for testing to see if she might have Encephalitis (she doesn’t). 

The final proverbial stab to the heart for Ashley came a few months after she and Alivia's dad took their daughter for comprehensive genetic testing, back in late 2023.  After a couple agonizingly stressful months waiting - through Thanksgiving, Christmas and the New Year holidays - the test results finally came back in February of this year (2024).

Those results were just about as crushing as humanly imaginable for any parent... Their daughter Alivia (12 years old at the time) was diagnosed with Sanfilippo Syndrome (MPS3A), often described as ‘Childhood Alzheimer’s’ because of its progressive and neurodegenerative effects on the child.  Only about 1 in 80,000 children are born Sanfilippo Syndrome. Life expectancy is teens to early adulthood, and no cure nor treatment currently exists.

Early on in her 'Sanfilippo Mama' journey (post- diagnosis), Ashley began to share her daughter’s and family’s Sanfilippo journey on social media. But while the support and love from so many people was absolutely encouraging and comforting, the public blowback – and even outright accusations that she was concocting this whole story to gain sympathy and publicity (!) – horrified her.  She just couldn’t believe that she was being accused of ‘faking’ her daughter’s Sanfilippo Syndrome diagnosis for sympathy and attention.  Here's the thing - Unlike most children with Sanfilippo, Alivia happens to still be fully verbal and mobile - for which she is so deeply grateful - but this is not the typical path for a teenager with this disease.  
 
But Ashley insists that the love and support that she's received from friends and family over the past harrowing year has more than outweighed the hate, and for that she feels incredibly grateful.  One thing she's particularly grateful for is the way that others have stepped up to be there for Alivia's siblings.  After all, they too are doing their best to navigate their own 'Sanfilippo life' journeys, and that in itself is a tremendous burden for any kid.   

​"They'll take my other kids out with them for one-on-one time - or even an overnight - to help make sure that they too feel special and seen and heard. As an individual; not just as the sibling to a child with a devastating disease.  It gives them a chance to feel like they're not just Alivia's sibling, but they're just them.  That's huge.  My family and I are so lucky to have these people in my life". 

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