 When I first launched RareDads RoundTables (RDRT) a few months ago, my primary goal – from a personal (and selfish) perspective – was to connect with other Sanfilippo dads across the country and world; to help myself to feel a little less alone and more informed in my journey as a “rare dad”. But what I did not expect was the level of interest and enthusiasm for this new platform. There’s a common and often underappreciated sentiment - we all need each other along this rare dad journey. Starting these conversations in the first place can be hard - especially for guys, who generally do not enjoy talking about their feelings and insecurities and all that stuff. What I also did not expect was the amount of genuinely valuable care, advice and resources we can provide to one another – simply by sharing our stories and the lessons learned along the way. Every one of us are both experts and students at the same time. Some of the stories shared were inspirational. Others, heartbreaking. But every story comes from a place of real experience. Let me share with you just a few of those stories (having received the permission and go-ahead from each of the Sanfilippo dads highlighted). A recent emotional 'trigger' for me (as a Sanfilippo dad) occurred just a few months ago - on Father's Day, ironically - when I found myself for the first time unable to take both of my kids out on a kayak with me. My son Connor, now 16 years old with Sanfilippo Syndrome type C, just recently developed a debilitating fear of being on a boat - something he thoroughly enjoyed as recently as just a few months prior. Another reminder of the slow, creeping, and relentless nature of the disease - sometimes hitting you over the head when you least expect it.
I had a harsh and unsettling reminder about Sanfilippo this Father's Day, when I wasn't able to take my kids kayaking together for the first time " One of our dads spends a good chunk of his life under water protecting his nation. His family at home (primarily his wife Noelle) tackles much of the Sanfilippo journey on their own while he's away at sea. Fighting to maintain home/life balance is hard for all of us. Billy's story drives home just how complicated those choices sometimes are. His son Logan, 17 years old, has Sanfilippo Syndrome (type A).
The more I keep myself busy on board the ship, the easier it is to stay focused and not think too much about what might potentially be happening at home ” As parents of Sanfilippo kids, we are all fighting battles every day. Pennsylvania dad Cory Hooks responded to an emergency situation in a very dad-like way. When his son Trent (Sanfilippo type B, now 18 years old) experienced his first seizure 9 years ago, he was the only one home that day (his wife Jamie was at work). Cory didn't know what to do at the time. But his first instinct was to throw his son over his shoulder and drive like a bat out of hell straight to the hospital.
That first one's a doozy ” Indiana dad Shawn Walsh's son Cannon (age 8, Sanfilippo Syndrome) has never had a seizure, fortunately, but all of that scary stuff is on his mind during any given week. And the way that Shawn copes with that is often by talking to other teachers and friends about what his son is going through. Conveniently, Shawn is a school administrator with a background in special needs education - expertise he is eager to share with the rest of our community.
Speaking of teachers and the school system, Brooklyn (NY) dad Jeremy Weishaar found himself navigating scary new terrain when his son Jonah (now 16, Sanfilippo Syndrome type C) was about to transition from elementary school to middle school a few years back. He and his wife (Jill Wood) were assured by the middle school teacher their son would be in great hands by staying put in the public school system. But his elementary school teacher thought otherwise. "Jonah will get eaten alive there", she cautioned them. They listened.
She told us, 'Don't send him there... He'll get eaten alive' " Florida native Randy Humphrey's daughter Fiona is no longer able to go to school. That's because Sanfilippo Syndrome has ravaged her body and mind so aggressively that she can no longer perform most of the daily functions she previously could - things like self-feeding, toileting, communicating, you name it. Randy knows that each new day that Fiona is here on this Earth is a gift, and he will continue to cherish every precious moment of it.
All I need is a smile from her, and that alone makes my day ” Shaun O'Neal and his family found themselves in a tough financial predicament recently. He makes a good living as a police officer, but not enough to support a family of six faced with extraordinary medical bills on a regular basis for son Kiernan (age 10, Sanfilippo Syndrome type B). At first, he felt like he was in no-man's land - earning just enough to not qualify for financial aid, but not enough to pay the bills. Shaun learned from the Sanfilippo community about the Katie Beckett Waiver, a Medicaid program that provides people under the age of 19 with serious conditions with institutional-level care at home.
We were denied benefits and financial assistance through the state three straight times when we applied. But then we discovered the Katie Beckett Waiver, and it’s been fantastic.” Lew Montgomery is a powerful example of an individual who turned the most profound personal grief into help and a guiding light for others. He has been kind and vulnerable enough to share his Sanfilippo journey in the past. His is a story that all Sanfilippo parents can learn from. When his son Lucas was diagnosed with Sanfilippo Syndrome (in the early 2000's), there was no social media or Facebook or anything like that for Lew and wife Stacey to turn to for guidance and support. Lucas was the only known case of Sanfilippo Syndrome in the entire state of Iowa at the time. How would they live this new life? How could the family help raise awareness and funding for cause? Lew fell back on the lessons of teamwork and bonds of friendship from his football career to raise money for the Sanfilippo cause, spread awareness, and ultimately leave a powerful legacy for his son that continues to shine bright in their community to this day. In honor of Lucas, the Montgomery family remains as committed and active as ever in their advocacy efforts to help one day defeat Sanfilippo Syndrome.
Lucas’s legacy remains ” I'd like to take a moment to acknowledge my new friend Dave Ross (from England), whose own health journey led him to become an advocate for men like himself living with rare diseases (in his case, Cowden's Syndrome). In 2020, Dave created a men's mental health awareness group (that meets online on a regular basis) to provide men like himself with a safe and inclusive place to feel a little less alone in their own rare-disease health journeys. We look forward to partnering up with Dave on initiatives going forward, as there is clearly a commonality across the two segments of the 'rare' population that we each hope to reach and inspire to action.
When I started RareDads RoundTable (RDRT), I wasn't sure what to expect. What I am finding is that the hardest topic in my life to talk about is easier to talk about with other dads going through the same thing. I know that the dads who have joined us thus far feel the same way and look forward to returning to share their stories in an environment of understanding and support. If you or someone you know would benefit from joining us, sign up here. We hope to see you soon, and we look forward to hearing your story too.
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Mike Dobbyn, Archives
November 2024
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