 Four years ago, shortly after receiving the devastating and soul-crushing news that her daughter Skyla Rae (5 years old at the time) was diagnosed with Sanfilippo Syndrome (aka “childhood Alzheimer’s”), Stacey Reynolds began planning Skyla’s funeral. “I knew it wasn’t going to be something I would want to do after she died”, said the Oldham (United Kingdom) mother of 4. As difficult and heartbreaking as it was at the time to plan her own daughter's funeral, Stacey is grateful she did it - because it ultimately allowed her to give her brave, beautiful Skyla Rae the fairytale sendoff that she so deserved - complete with a princess coffin, horses, a flock of doves, the whole nine yards (as they say in America) - perfectly befitting of the brave and beautiful warrior princess that Skyla was and will forever be in the hearts and souls of so many that followed Skyla’s (and mum’s) heroic Sanfilippo journey over these past few years. Stacey described her daughter Skyla Rae as a feisty little "firecracker", the "life of the party", and the glimmering ray or light wherever she was. She knew nothing but love and affection - to family, friends and strangers alike. But under that soft sweet exterior and radiant smile was a fighter. A brave and positive minded little Sanfilippo warrior child who touched and inspired the world with her heroic journey. She was in and out of hospitals, month after month, fighting as hard as she could. In the past, she had always bounced back from brushes with death, but not this time. Her little body had given it everything she had left. She was only 9 years old. And now, Stacey vows to honor Skyla's memory and legacy by continuing the fight against Sanfilippo Syndrome and other MPS diseases until they're eradicated and no longer taking the lives of innocent children. One of the specific causes that Stacey is now fighting for is the urgent need to make comprehensive genetic testing fully available to families everywhere—and as early in the child's life as possible. Early genetic testing is a cause that Stacey's quite passionate and fired up about, because it really hits home. In fact, Stacey and her family first learned of Skyla’s Sanfilippo Syndrome diagnosis when she was five years old - and ultimately left the family with 4 short years to not only grieve this very emotional and life-changing ‘loss’ of her daughter, but also—at the same time—raise this very daughter (Skyla) to be the best, bravest and happiest version of herself that she could possibly be, during her short time on this Earth. Stacey Reynolds did just that. She fought to the end with her daughter, tirelessly, and that fight will carry on because it has already fueled a fire and a mission inside of her more powerful than she ever imagined. “If my efforts can help save even just one other family the heartache that Skyla and our family went through", said Stacey, "then it will be well worth it”. Rest in peace, beautiful Skyla Rae. Your life mattered. And your fight and legacy will live on. To support Stacey’s campaign to create “Skyla’s Law” in the UK—an initiative to educate and encourage medical communities and new parents about the importance and availability of early genetic testing--please visit here to sign the petition. In the clip below (1 minute), Stacey talks about her daughter Skyla and what made her so special... and directly following that you'll find the full interview (7 minutes) - which took place on February 8th 2024, only a month after Skyla passed away. The world was her oyster, and this disease (Sanfilippo Syndrome) just took it all away from her " Click below for the full (7 minute) interview: There was only so much her little body could take. She let me know she had had enough. She let me know it was her time".      
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 Lt Commander William ('Billy') Pacl of the US Navy is not only an officer and a gentleman, but he’s also a Sanfilippo dad. And a deeply loving and devoted one at that. What is fairly unique and interesting about Billy's rare-disease parent journey, however, is that he spends nearly half of his days away from his family - underwater, in a nuclear submarine (sometimes going 'dark' for months at a time) - serving and protecting his country from foreign and domestic threats on the open seas. Billy's wife Noelle, meanwhile, happens to be a TikTok superstar (with a whopping 3 million followers at this point) - having harnessed the immense power and reach of social media over the past few years to share her son Logan's journey with an ever-growing audience and educate the world about Logan's (ultra-rare) genetic disorder, Sanfilippo Syndrome (type A). But Noelle insists that Billy is truly the unsung hero in the Pacl family. "Billy is seriously one of the most selfless people I know", Noelle said. "Everything he does, he does with others in mind - whether it's his family, his submarine crew, or even complete strangers". He also happens to be "wicked smart", according to Noelle. In fact, Billy holds both a physics degree and a degree in public administration (focusing on nonprofit work) - a pretty rare combination of academic interests, no doubt, but it's one that makes perfect sense for a man in the unique shoes of Billy Pacl, who applies nuclear physics in his day job (in the Navy) while at the same time raising a boy with a genetic disorder nicknamed "Childhood Alzheimer's" and helping to raise awareness for the disease. Billy's an accomplished athlete as well, having won a bunch of running races in his day. Billy has always turned to exercise and athletics for managing his stress - whether he's on land or on a submarine (there's always a way to get a workout in). In the past, it's been mainly distance running (Noelle insists he could wake up any random day and easily complete a marathon), but recently he's become an avid weightlifter during his latest stint on shore. Billy's deep love and appreciation for his family is quite evident by the way he speaks of them. He's in awe of his wife Noelle's strength and perseverance in "holding down the fort" - and taking care of Logan every single day - especially those times when he's out on duty at sea for extended lengths of time. Billy's first stint away at sea was for about 3 months. What he remembered most about that first one is that his son Logan (6 at the time) didn't seem to recognize him when he returned to land. As Billy told me, that was a pretty jarring and heartbreaking experience for him at the time. Since that one time, though, Logan has had no trouble recognizing and getting very excited about seeing his dad when he returns from sea. Billy's longest-ever stint in complete 'dark' was last year - underwater for six full months - with no contact whatsoever with anybody outside of the submarine (no internet, phone, Zoom, nothing). In our conversation (which took place on Feb 1st 2024), Billy told me a little about his life and upbringing, his professional journey and career path as an 18-year member of the U.S. Navy, and about some of the unique challenges associated with being away from your family for an extended length of time - and then readjusting to "land life" upon return. I wanted to know, how does Billy "fit back into the mix" when he returns to land and is with his family, after Noelle's been holding down the fort on her own for those past 3 months? How does Billy feel about the healthcare system - called TRICARE - that's available for Navy (and military) families like his? And how did his family navigate that healthcare system in finding Logan the right medical resources along his Sanfilippo journey? You'll hear about all that and more in our conversation. In case you were wondering (like I was, when I first heard the term)... TRICARE is the uniformed services health care program for active duty service members (ADSMs), active duty family members (ADFMs), National Guard and Reserve members and their family members, retirees and retiree family members, survivors, and certain former spouses worldwide. For more information, visit their website at https://www.tricare.mil/. As for Billy in the near term... He told me that he expects to be on ‘shore duty’ for the next 6 months (but that could always change, of course), and we look forward to having him share more of his story and contribute his important voice to the Sanfilippo Project in the months ahead. Lieutenant Commander Pacl, thank you for your service to our country. * Below you'll find several video clips from our interview (each 1-2 minutes long). Directly below that you can find the full interview (19 minutes long). The biggest thing I noticed when I got back was that Logan (6 years old at the time) seemed to not recognize me at first" I always thought it was a cool and unique thing, because while others on my ship might have photos of family members on their computer, I'm able to to have hours and hours of video of my family while I am underway at sea, sometimes for months at a time. Now, before every time I go underway, I ask Noelle to download the videos for me ahead of departure, so that I can view them whenever I have the time while away from my family." When a Navy family is relocated and required to move, they often don’t receive the official order to move until 2 months before the move, which doesn’t allow for a lot of time to get new doctors and specialists in place for the special-needs family member (Logan, in this case) moving to an entirely new area or town. And for those, there’s often at least a 6-month waiting list just to be initially seen. It almost guarantees that you’re going to have some sort of gap in coverage or services upon moving" Click below for the FULL interview:       Washington (state)- based Sanfilippo mom Noelle Pacl was born in Germany (dad was a U.S. military officer) and spent her first nine years there, then from there she and her family moved to Texas, where Noelle spent her middle school and high school years. It's there where she met her (eventual) husband Billy. She knew him only as casual acquaintances back in high school, but got to know him during a summer job following high school and their relationship would only blossom from there... I love running. I have to get that in every morning, if I can. That's my alone time." |
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Mike Dobbyn, Archives
June 2024
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