 Florida mom Christin Ulrich is sweet, reserved and friendly on the outside, but she's also got a lot of fight and tenacity inside of her as well - especially right now, with her 4-year old daughter Veda's life on the line. Veda has Sanfilippo Syndrome (type A), with a life expectancy of early teens - if there's no progress against the disease until then. Fortunately for Veda and her family, there is hope, and scientific advances are being made daily in labs across the world. It's a race against time, and her family is now on the front lines of fundraising to help turn these scientific advances into actual life-saving clinical trials and treatments. Here's Christin's story - and her urgent plea to the world.  Palm Coast (Florida) mother of two Christin Ulrich realized early on that something was wrong with her daughter Veda (now 4 years old). As a young toddler, Veda seemed to possess a (quite literally) unquenchable thirst for liquids, as well as the (clearly related) condition of very heavy and continuous urination throughout the day. Veda's pediatrician at the time was puzzled as well but expressed little concern or sense of urgency at the time. And he assured Christin and her husband Jericho that there was no need for genetic testing at this time. From his professional/medical opinion, he told them, Veda at least did not appear to be diabetic - which was his main risk concern that he communicated to the family at the time. There was no mention or suggestion at the time that it could possibly be a rare disease (that could be tested for). But Christin’s maternal instinct (and professional experience in the healthcare space) were telling her otherwise. She was confused. "Why aren't they pushing for genetic testing?", she asked asked herself. She then asked the same to the doctors, again and again, but their lack of urgency didn't sit well with her. It just seemed to Christin like the sensible and most efficient way to rule out (or in) genetic conditions that can't be easily distinguishable by the naked eye. And so, the family visited another pediatrician to request a second opinion. And this time, when Veda promptly demonstrated (in the doctor's presence) a highly unusual ability and willingness of a two year-old child to gulp down 2 giant glasses of water in one sitting - almost like a human wet-vac - it prompted this new doctor to immediately order testing - at least for diabetes, which was his initial gut feel about this one. And so Veda got tested for diabetes. She tested negative. Once again, the Ulriches were sent on their way with no solutions or answers to the puzzling medical abnormalities that their youngest daughter Veda continued to demonstrate. Like many other rare disease families early in their journeys, the Ulrich family lived in a cloud of confusion over the next year that followed (leading up to Veda's Sanfilippo diagnosis) - and along the way came Veda's terrifying, out-of-nowhere temper tantrums, then the constant upper respiratory infections (and hospitalizations), continual ear infections, and a whole slew of other stuff - with still no answers. Finally, the Ulrichs decided to take Veda to a kidney doctor - one last shot at an explanation, they figured at the time. This kidney doctor heard the story, took one look at young Veda, and turned to Christin and said “Call genetics today, you need to get her in for testing. And it's going to take about a year before they can get her in.” Veda's genetic testing appointment was scheduled for 8/8/2022, almost exactly one year after she made the call to schedule an appointment (just like the kidney doctor warned her). “But I thought nothing of the 1-year time window at the time; I just figured, 'Ok it is what it is'.”. But several months later (in June of 2022) - about 2 months before that genetic testing appointment even happened - Christin was just randomly scrolling through her TikTok feed and came across a video of (Sanfilippo mom) Carrie Fowler and her daughter Haidyn, a widely followed (over 2 million followers) TikTok mom/daughter duo who were (and are) bringing about massive, widespread awareness of Sanfilippo Syndrome to millions of people across the world who had never heard of the disease before. “Oh my gosh, she (Haidyn) could be Veda’s twin!”, Christin told herself - scaring the living shit out of herself as she did a quick google search of Sanfilippo Syndrome to learn more. Hyperventilating, she immediately convinced herself that this must be exactly what Veda has. She even sent videos of Haidyn to her mother. Her mother, in turn, told Christin that she might want to get off the internet and looking at dying kids online. She told Christin that she was probably just hyper-paranoid from being around dying people all the time during the COVID crisis those past couple years - in her day job as an ultrasound tech. Christin was already suffering from depression at the time, and this just further ignited her worries and deepest fear. Veda Ulrich was then officially diagnosed with Sanfilippo Syndrome in August of 2022. But the Ulrich family refuses to let Veda go down without a fight - and they're determined to help their daughter leave a lasting and immensely positive legacy on the world in her battle for survival against the Sanfilippo monster. The family recently teamed up with the 501c3 nonprofit, Cure Sanfilippo Foundation (www.curesff.org) to produce (and release) a 3-minute film called Saving Veda. Released to the world (online) a little over a month ago (on 2/29/24 - Rare Disease Awareness Day), the Saving Veda film is essentially a 'Trojan horse' for the Ulrich family to help share Veda's story and make the world aware of Sanfilippo Syndrome - and, at the same time, raise desperately-needed (and severely lacking) funds to fuel the launch of clinical trials to help extend the lives (and happiness) of Sanfilippo children everywhere. “It’s hard putting your vulnerable self and your family out there for the world to see", explained Christin, "but it’s also so important for us to fight for our kids. And it's important for us to let everybody know - and see - that we are willing to do anything for Veda and all the other children across the world fighting Sanfilippo Syndrome”. Christin expressed sincere gratitude for the amazing support her family has received from people everywhere - not only family, friends and neighbors - but also strangers that are following Veda's fight and pulling for the Ulrich family. And the family is witnessing the beautiful power of humanity come together to fight for one of their own. “Our community is starting to rally around us for sure”, she said. Please support the Ulrich family in their fight to save Veda's life from Sanfilippo Syndrome, and click here to watch the Saving Veda film. Christin, thank you for your fight! In the following clip, Christin talks about the days following Veda's Sanfilippo Syndrome diagnosis - and how the Sanfilippo community rallied to her family's side during their darkest hours: It felt like the entire Sanfilippo community was just giving us a big hug during our time of need" To watch the full interview, click below: It’s hard putting your vulnerable self and your family out there for the world to see, but it was important for us to let everybody know - and see - that we are willing to do anything for both Veda and all other children across the world fighting Sanfilippo Syndrome” 
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Mike Dobbyn, Archives
June 2024
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