"purpose is a powerful thing" - meet sanfilippo super-aunt jessica haywood

"Several years ago, I made a list of things I wanted to achieve before turning 30, and one of those things was to find a cause I really cared about to get involved with.  I had been involved in various causes at the time, but I wanted something deeper. Sadly, right before I turned 30, we received my niece Sadie’s diagnosis of Sanfilippo Syndrome. It has given me a lot of purpose to help not only her, but also other children out there across the world living with this disease - both now and in the future. When you give back, it makes you feel good.  And that’s the gift of Sanfilippo.”  

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When Jessica Haywood’s niece Sadie Rae was diagnosed with Sanfilippo Syndrome 8 years ago, she knew that her sister-in-law (and best friend) Ashley - a brand new mom, whose daughter was experiencing frightening medical complications right from birth - was going to need all the help she could get. She didn’t hesitate. She was going all in, and she was determined to be in their corner every step of the journey going forward. Both sides of the family immediately rallied to her side. But from day 1, Jessica has been Ashley’s right-hand woman.  She's the unsung hero - the behind-the-scenes Wizard of Oz, if you will - whose heart, hustle, creativity and deep sense of purpose have powered the Saving Sadie Rae campaign from day 1.

Who is Sadie Rae, you might ask? She's the adorable little 8-year old firecracker from North Carolina whose personality and southern accent have captivated the hearts of millions on social media (TikTok, Instagram, etc.). She has Sanfilippo Syndrome (type A), diagnosed at the (ridiculously early) age of 4 months - having suffered several early medical complications right after birth, including brain surgeries - which prompted a very concerned Ashley to request from the doctors that they get genetic testing done for her young baby girl who was already fighting for her life.  (For more on the importance and urgency of early genetic testing - and why the 'earlier the better' - click here for another recent interview with another Sanfilippo mom).  Ashley and (Sadie's dad) Jason got her tested, and the results came back positive. The news was broken to Ashley by a phone call from the geneticist. She felt broken, terrified and alone.  

Interestingly enough, Jessica had already heard of Sanfilippo Syndrome before Sadie was even born.  That's because she had learned (years prior) of a distant cousin of hers named Izzy who had lived with (and died from) Sanfilippo.  Jessica never actually met Izzy in person, but she recalls being very moved and touched by her story at the time, which prompted her to learn about the disease and become emotionally invested in it long before her first niece Sadie was ever born.  So she already knew that this disease was bad. Like, really bad.  And so, when Sadie got diagnosed, Jessica knew what she needed to do.  She was going to be there for her brother (Jason), Ashley and Sadie every step of the way going forward - and she was going to be proactive about it.  She didn't just ask if she can help, she came with a plan to help. And she's never left their side since.

When she's not pouring her heart into the fight against Sanfilippo Syndrome and managing the Saving Sadie social media, Jessica works as the Managing Partner of Otter Creek Investments, where she invests in and advises data analytics startups across various industries. She also serves on the board of the Cure Sanfilippo Foundation (where she currently manages the clinical trial data-sharing initiative), Jessica is also an active member of the Carolyn Smith Foundation board, which supports nonprofits in Tennessee and beyond.

My conversation with Jessica and Ashley took place back in April of 2024.  It's been fun getting to know them.  They're both incredible women who have already done so much for the fight against Sanfilippo Syndrome, and it's a privilege for me to now call them friends.  We at the Sanfilippo Project are very excited about finding opportunities to partner up with the Haywood girls in the future, because they both bring so much to the table by sharing their experiences and journeys.  

Below you'll find various clips from our conversation that I think you'll really enjoy.  I put the clips in chronological order, so essentially they comprise the 'full' interview (if you watch them all). Enjoy!

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​In the following clip, Jessica Haywood recounts the early years of her friendship with sister-in-law Ashley - right up until the moment that her niece Sadie Rae was born.​

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​In the clip below, Ashley talks about her pregnancy with Sadie Rae - followed by severe medical complications at birth and then the devastating diagnosis of Sanfilippo Syndrome that followed shortly thereafter.

​Shortly after Sadie's diagnosis, Ashley and family flew to South Carolina to meet the founders of Cure Sanfilippo Foundation along with other families with children with Sanfilippo.  She recounts that experience in the clip below. ​

​​​Lots of people wanted updates on Sadie after learning that she was diagnosed with Sanfilippo Syndrome.  Keeping up with those questions and requests soon became overwhelming for Ashley, which is when Jessica took the reins and help get the Saving Sadie Rae social media campaign up and running. Listen to both women talk about that experience here.

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Sadie was fortunate enough to be in a clinical trial for 2 years when she was really young.  And the results were good; she was maintaining skills and seemed to be progressing well.  But then the study was halted, because of lack of funding, which was devastating.  That certainly takes its toll on a marriage, and Ashley's marriage was no exception.  She shares those experiences in the clip below.  

The Saving Sadie Rae campaign has a lot of followers and has raised a lot of awareness about Sanfilippo Syndrome, a disease likened to childhood Alzheimer's. But how much do they want to grow the page going forward, now that Sadie has lost skills and the disease has progressed over the past couple years? Ashley and Jessica discuss in the clip below.

Jessica Haywood joined the board of the Cure Sanfilippo Foundation a couple years ago, an opportunity that came about after years of doing great volunteer advocacy work for the foundation.  Jessica explains here how that came about.

"When you give back, it makes you feel good.  And that, I've discovered, is the beauty of Sanfilippo."  Jessica explains, below.