On January 6, 2021, Governor Mike DeWine signed House Bill 32, the larger bill that Senate Bill 275 was added to, recognizing November 16 as Sanfilippo Awareness Day in Ohio forever.
In October 2019, Oliver’s Sanfilippo Syndrome diagnosis was confirmed. Our hearts stopped beating.
“Sanfilippo is a terminal, neurodegenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die. Simply put, it is like Alzheimer’s in children.” (Glenn O’Neill… Dad, Donor, and President of Cure Sanfilippo Foundation)
How could this be the fateful future for our love-love boy… a single gene defect? Genetics can be cruel. Oliver’s little body lacks one necessary enzyme… one! But this missing enzyme creates
a toxic buildup in every one of his cells. This toxic storage is especially harmful to his brain. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.
Our family cried, hugged, cried, mourned, cried, grieved, cried, collapsed, cried, reached out, cried, found support, cried, picked ourselves up, dried those tears and turned them into more controllable sniffles… and went into action mode sharing Oliver’s Tomorrow and spreading an awareness of Sanfilippo Syndrome.
At this time Oliver attended Christ Lutheran Children’s Center Preschool where the staff, teachers, and administrators sponsored a Sanfilippo Awareness Day on November 16th. The school called all the parents in Oliver’s class and purchased purple Sanfilippo shirts for all the children to wear. It just happened that Dave Salisbury, who works in government relations, had a daughter who attended preschool at Christ Lutheran. (I know what you’re thinking!) And yes, Dave got the ball rolling to expand the arena of Sanfilippo awareness from the community to the state of Ohio.
And this is where Frank Strigari came into the picture…
Frank and Brian attended high school together in Cincinnati and was in Jen and Brian’s wedding. (And now you get the bigger picture…)
Oliver’s diagnosis inspired Dave Salisbury and Frank Strigari to leverage their professional expertise to get November 16th officially recognized as Sanfilippo Awareness Day in Ohio. State Senator Stephanie Kunze agreed to sponsor the original bill, Senate Bill 275, having learned about Sanfilippo Syndrome a few years before at a local constituent’s lemonade stand fundraiser for Cure Sanfilippo Foundation. The cause touched her heart then and now she was inspired to follow her heart.
Glenn O’Neill, Dad, Donor, and President of Cure Sanfilippo Foundation participated, via Zoom, in the virtual bill-signing ceremony, along with Jen and Brian.
”This bill is a great reminder of the power in every single action, every effort to spread awareness… Thank you to Dave, Frank, and Sen. Kunze for all the work you did to make this bill a reality… And to each and every one of you who keep spreading awareness about this terrible disease. Every action, every moment makes a difference. And it means the world to all of our families.” — Glenn O’Neill
Ditto that from Grammy L…
A few days later, Jen and Brian received a handwritten note in the mail from Governor DeWine.
Most blog posts are ordered newest-oldest, but I am not your ordinary blogger. Actually, I am not a blogger at all. I am just me, “Wandering Gypsy Laurel” aka Grammy L, preserving an online journal of my adventures with my husband Jeff as full-time RVers for the past 5 1/2 years now.
So… here is a list of all my 2020 posts in chronological order. This is more for me, and maybe my family, than anyone else as this blog site serves as my online journal. And someday I will revisit our 5 years-plus homeless adventure living in a tin can:
Soooo much has happened since I last visited Oliver and Reagan the end of November and early December of 2019…
2020 Came and Went
When I hugged, kissed, and waved goodbye in December, I had no clue that I wouldn’t see them again until March of 2021! COVID-19 shut down the world and I became sequestered in the Colorado Desert of Southern California believing in science by wearing a mask, avoiding group gatherings, and not flying, especially since Oliver had qualified for the Sanfilippo clinical trial and was awaiting his gene therapy IV-infusion within days after his 5th birthday on April 2nd. (Even without the danger of COVID-19, Oliver needed to be quarantined anyway so that he was not sick for his medical procedure.)
Brian did a Coronavirus shopping, until eventually having groceries delivered…
Oliver turned 5… This was his first birthday since his Sanfilippo diagnosis so the whole family’s emotion-meter was filled with so many fierce feelings! Even before COVID, Jen, Brian, Reagan, and Oliver were staying away from new environments to keep Oliver as healthy as possible. Jen and Brian were already crawling up the walls even before the pandemic quarantine!
Jen posted on her Facebook page, Oliver’s Tomorrow:
Oliver LOVES smiling faces, waving hello, and knowing people’s names. We have an on-going debate on whose birthday it is that starts mid-March. (I say it’s my birthday right now, then he says it’s his and that mine is after his. Then we both break into song, singing happy birthday to ourselves. Then, one of us sings happy birthday to the other and vice-versa.)
Yep, this is so true! I have spent his last 4 birthdays participating in this fun routine. And Oliver knows it’s his birthday, then Mom’s birthday, then Dad’s birthday, then Reagan’s birthday!
So Jen reached out and asked friends and family to send Oliver a video singing him happy birthday.
He underwent a medical procedure at Nationwide Children’s Hospital in Columbus…
Jen posted, “Oliver was asked the impossible this week, handled it like a champ, and even gave his sister his share of celebration ice cream.”
The Easter Bunny sent Oliver and Reagan on an Easter Egg Hunt…
Oliver graduated from Pre-K via a drive-by ceremony…
They had a splash on the 4th of July thanks to Zane’s grandparents’ giant water slide. Jim and Jan live next door to Brian and Jen…
Jen, Brian, Oliver, and Reagan did some day-tripping:
The Wilds, a private, non-profit conservation center located on nearly 10,000 acres of reclaimed coal mine land in southeastern Ohio…
The Columbus Zoo…
Oliver started Kindergarten…
Reagan started pre-school after “graduating” from Ms. Kelsey’s Day Care…
The upstairs bathtub overflowed and the kitchen ceiling became a shower…
Follow-up testing 6 months after Oliver received the gene therapy procedure…
Reagan turned 3…
The 1-year anniversary of Oliver’s Sanfilippo Syndrome diagnosis rolled around…
Thank you, Glenn and Cara O’Neil from curesanfilippofoundation.org, for bringing us your army of support! It only took one phone call and you both became Velcro angels holding our family up, connecting us with other families whose children became our children too. You made us strong warriors fighting to help find a cure for and raise awareness of this rare, cruel, incurable, and devastating disease. You let us know we were not alone and you have never left our side!
Valerie Tharp Byers, Will’s mother, posted this message to Jen…
“The diagnosis was the worst thing we ever received, but it did alleviate the stress of “what’s going on?” I remember your feelings so well. Motherhood was hard, but why did it seem so much harder for me than my friends? Why did Will seem like so much more work? We were all tired and emotionally drained, but I was completely empty and didn’t understand until we got the diagnosis that I had been parenting a special needs child that I didn’t know had special needs. And then being able to connect to a community that knew exactly what I was going through and feeling… getting the diagnosis was terrible, but it also gave us the direction we needed in order to be able to live and love our life as a family. I hate that you had to join this “club,” but I hope you know that you are all loved by so many!”
Jen and Brian shared their feelings on Oliver’s Tomorrow Facebook Page…
I remember receiving a text from my son, Brian, telling me to call him. I knew something was up when Jen texted me too saying, call Brian. So I did, and he had to call me back because he was putting Oliver to bed. When he called me back he burst into tears and said, it’s about Oliver and something about a Spanish sounding diagnosis and that our sweetie love-love boy had no clue that he was slowly dying. All we could do was cry. I couldn’t even look up Sanfilippo Syndrome because I wanted so much to stay in a state of denial. The next day was my son, Andy’s 39th birthday. (He lives in London.) I was hoping Brian would have told him about Oliver’s diagnosis before I called. But I was the one wishing my son in London a Happy Birthday and asking him if he had talked to Brian yet. No. I didn’t want Andy to hear about Oliver from me, but I had to tell him. He burst into tears and we both just cried and cried. Andy howled!
To find out more about Sanfilippo Syndrome, go to curesanfilippofoundation.org. And to donate to curesanfilippofoundation.org at no extra cost, consider shopping at smile.amazon.com… Choose Cure Sanfilippo Foundation as your supporting charity.
Jen posted this on Thanksgiving:
“Thankful for a wonderful younger sister… thankful for a wonderful older brother… thankful for these magical days…
Lisa Kollins launched the Superhero Project in 2016. She interviews children with challenges to learn about their inner superhero qualities, then connects with professional artists across the world to bring the character to life.
The Project began when Kollins volunteered as a program specialist at Camp Sunrise, a former camp for children who were affected by HIV and AIDS, near Cincinnati, Ohio. In 2015 she asked all the children to describe what their superhero alter-egos would be like. She then arranged for artists to draw quick sketches and presented the children with depictions of their superhero characters in a slide show at the end of the camp.
Within 20 seconds I was weeping, half the counselors were crying, and the kids were just going nuts. I had stumbled into something more powerful than I could imagine.
…Too powerful to be a one-time thing… (cleveland.com)
So Kollins spent a year developing a plan for her Superhero Project transforming children into superheroes with vibrant posters created by artists from around the world. And she does all this in her spare time. By day she is an administrator at the Social Justice Institute at Case Western University. (thedaily.case.edu)
It’s important, I think, to recognize that every kid deserves to see themselves reflected or depicted in a positive way. People are marginalized in our society for a lot of reasons—for race, for disability, for illness, for class, for education—and it’s really wonderful to have the opportunity to create these characters that really reflect the spirit and the soul of the kids I meet. It’s an honor and a privilege that these families allow me into what, for some of them, are the worst moments of their lives. I know some of the kids that we’ve interviewed have passed away after our interview. It’s a privilege to walk with these families for a short time and to bring some joy into a really difficult time.
Oliver’s mom saw Will Byers’ superhero picture posted on his Sanfilippo Facebook Page, Willpower. His mom, Valerie, encouraged other families to reach out to the Superhero Project, so, Jen did.
And Lisa quickly responded and set up a time to talk with Jen on the phone to learn about all the wonderful qualities that make Oliver a bonafide hero. Jen described his love of books, getting kids their water bottles as they left preschool for the day, giving big hugs, his love for Larabars, Paw Patrol, his love for his little sister, his big smile, his enjoyment of being chased, playing at the playground, going down the slide, snuggling, giving Eskimo kisses, how he loves the letters of the alphabet, knows everyone’s names and who belongs with who… well, he is just a bundle of love! Jen sent Lisa some photos as well. They decided that his superhero name would be ‘Captain Hugs’, originally coined by his teachers at Christ Lutheran Preschool for a similar project…
Lisa composed the story of Captain Hugs and Ana Gusson drew the superhero poster:
Following diagnosis day, Brian and I met with the Geneticist. The doctor was so loving, and even she’d some tears with us. He said there were reasons to be hopeful. There were clinical trials underway for Sanfilippo Syndrome Type A and Type B that he believed would improve both lifespan and, most important, quality of life. Life. More hugs, more laughs, more meals together, more playing chase, more “Ugga Mugga” Eskimo kisses, more hand holding, more snuggles. He gave us great hope that Oliver’s story isn’t written yet. His words carried me, gave me strength, filled me with hope. There was significant medical progress for his Sanfilippo Type.
I also remember all the brave parents in my new community who reached out and offered their support. I remember one parent saying, “The beginning is SO HARD.” I needed to hear that. That it doesn’t get progressively harder but instead, you’re hit by a truck, and then hold on for dear life over the rocky terrain. I remember seeing a beautiful mother with a photo of her and her friends. She was smiling. It encouraged me that one day, I’d smile again. I remember a dad Michael Dobbyn adding a 💪 emoji to all of his posts, and I needed every one of them. There was strength and even lightness that I so desperately needed.
For that dad, when he got hit with the truck, he was told there were no clinical trials for his son’s Sanfilippo Type C. His son Connor is fighting for his life. As his dad says, “He’s just all love, it’s all he has in him.” Another Sanfilippo child running at the Speed of Love. And a parent running at the Speed of Love to save him. If you have it in your heart, please watch, please share his video:
On this day, the anniversary of his diagnosis, I wanted to share my thoughts with everyone who has shared our journey and supported us along the way. There are so many people to thank and if I listed all of you, I fear you might stop reading from the long list! So, I won’t do that. But what should I share? I have so many thoughts and reflections and emotions — there is no singular place to start.
This is a heavy duty day. I remember the crying phone call from Jen in my office— seconds before my very last moments of blissful normal life. The only words were: “Come home now.” The drive home, not knowing anything, but knowing it was bad, but hoping, begging, it was not that bad, strangely wanting the drive to be longer, delayed. I mean, how often I wish he had something that was not life-ending . . . those, those thoughts don’t leave.
But you can’t let them take over. And I don’t. And we don’t. You prune. You cut back. You weed. Of course, you make sure to never mulch or soil. A certain narrative, as they often do, oh the stories I have in my head seem countless, has bubbled up. It’s simple. It’s pure. And so, I just thought I would let you know about Oliver and his super strength because it’s an absolute privilege to spend every day with him, spend every struggle with him, spend funny moments with him . . . be his dad.
One of the most coveted phrases in the English language is the three-worded “I love you.” I prefer a fourth-word phrase that Oliver likes to tell friends and strangers: “This is my dad.” Oh, if you could only know because he’s beaming, and he’s pointing and not everyone can understand what he’s saying.
This is not a statistically proven fact because there is yet to be invented such an instrument that can measure it, but believe me, when there is, the results will tell you that Oliver runs at the Speed of Love. With that, I have no doubt.
He loves baths so much that if you don’t watch close, your kitchen ceiling will start leaking.
He loves movies so much that he shrieks at impossible decibels at his favorite parts.
He loves the outdoors so much that he will run outside . . . even if there is snow on the ground . . . even if he doesn’t have a jacket on . . . even if he doesn’t have shoes on . . . even if he doesn’t have socks on . . . even if it’s still dark . . . even if it’s 5:30 in the morning.
He loves people so much that he always says hello to anyone walking by and asks “what’s your name?” — always.
He loves his sister so much that the main way to tell her is in a HUGE tackling-hug. And he loves telling me ‘that’s my sister, be nice’ if I am trying to discipline Reagan.
He loves his family so much that he points to pictures around the house and says “that’s my family.” He smiles with pride. It’s infectious.
He loves school so much that he runs into the building, backpack bouncing, water bottle erupting, lunchbox jostling, him almost tripping, up the steps.
He loves life so much that to him there is nothing better than looking at one of his favorite books, in the sun, munching on a piece of pepperoni.
He loves people so much that he tells the nurses at Nationwide (Children’s Hospital) ‘thank you’ after they are finished with another one of his numerous blood draws or procedures; and this is after all the screaming. What a tough kid. What a brave boy. What a compassionate kid. My personal hero. I shall never have another.
He loves . . . he loves all of you, he loves being here, he loves being present, he loves being hugged, he loves giving hugs, he loves being where the action is, he lives trying to help, he lives saying “I love you” at the end of the day, and in the middle, and in the beginning and all of those many, many, many times in between. I will stop here. I am crying and I fear my list is getting long.
We need more people like Oliver in this world. Wouldn’t it be so healing and curing if we just said I love you more and accepted things for their good? It’s truly unconditional. It is not an easy love but it has sheer muscle and it breathes and it is relentless — oh dear God is it unstoppable.
Why then do these special people with Sanfilippo get such little time? Maybe all this active love actually breaks their heart. I think that it is not surprising that Oliver’s favorite color is Red.
I also think that it is wondrously fitting that his name is in fact, Oliver. Quite telling really. Rearrange the letters if you will. I see: I, Lover.
A year ago today was the worst day of my life. Oliver and I were simply going to an initial genetics appointment for what I thought was ‘ruling things out.’ I had no fear, no concerns going to this appointment. I answered endless questions about his history — when he started sitting up, walking, talking… his difficulties sleeping, his constant congestion, and eventually some of the regression we had seen. The doctor asked me to pull up photos of Oliver at different ages. I was happy to flash photos of his ear to ear grin at different ages. The doctor left the room and came back several times. Finally, he came back with a packet for me to take home and read. As I held it and listened, I heard “Sanfilippo” for the first time. I didn’t grasp what the missing enzyme… the accumulation of GAGs… the neurons dying…meant… I didn’t understand the magnitude, but I could tell by how slowly he spoke and his kindness in delivery that it was bad. I couldn’t form the words to ask, “Is this life-shortening?” When he left the room briefly again, I flipped through the packet, desperately searching for “Lifespan”. There it was…
“most children die in their late teens.”
I heaved big sobs and clung to my sweet boy. When the doctor came back in, Oliver held my crying face in his hands and looked at the doctor and said, “My mom needs a nap.” He said it over and over, showing love for others as he always, always has.
The doctor wanted to give Brian a chance to talk to him, so we set to meet again the next day. I waited in the lobby with Oliver for a blood draw that would eventually confirm that he had Sanfilippo Syndrome Type B. I texted Brian that we had an appointment the next day. When he texted me back, “Sure. How’s Oliver?” I couldn’t respond.
Oliver and I went home. It was a beautiful fall day and Oliver and our dog, Faelan, played in the backyard while I called Brian.
“Is it bad?”
I waited for Brian, as I watched my beautiful boy, so happy, so happy, so full of life, running, laughing, throwing the tennis ball around.
I don’t remember much more about that day, except holding Oliver and crying. Reading the packet through tears, everything matching up — even physically — the coarse hair, the thick eyebrows. I googled Sanfilippo and my screen filled with photos of children who looked just like my son. His Sanfilippo brothers and sisters who would journey together — through losing their ability to speak, losing their ability to walk, suffer pain and seizures until they join the Sanfilippo angels that have gone before them, gone too soon.
But here he is today, looking for his friends — enjoying today for what it is — a gift.
It’s the eve of the 1-year anniversary of Oliver’s diagnosis. Before we had a name for what Oliver was experiencing, we lived in a state of anguish and confusion.
Simply having one parent take two kids around the block proved too challenging most days. I remember telling a co-worker I couldn’t take both kids to the zoo by myself, and he said “What? You gotta work on that.” He didn’t mean anything by it, neither did loved ones saying we disciplined too much, too little, not the right way, or telling me that trick that worked that one time with Oliver.
I remember going to a kid’s birthday party with Oliver. When the kids went upstairs to play, I panicked having Oliver be out of my site in case he had a meltdown and hit another kid or destroyed a kid’s toys. I felt weird, though, inviting myself upstairs in their house. I stood awkwardly at the bottom of the stairs. And when he did have his impulsive meltdowns, I always quickly scooped him up and tried to get him away from where ever we were. I could often see the parent’s face saying, “What happened?” I couldn’t explain it. I also didn’t know the extent that my child was so much different from other kids. At that same birthday party, when I went upstairs, with inklings of Oliver starting to escalate, my first reaction when I saw the kid’s bedroom was amazement—there were toys?! How does the child not throw/break/eat them?! There was a GLASS vase?! GLASS?! GLASS?! That wouldn’t last 5 minutes in Oliver’s room…
And school, Brian always dreaded pick-up, as there were always the required incident reports he had to sign. Sometimes multiple in a day. I remember one time in particular, I was talking to the teacher as I dropped Oliver off, and he went right over and dumped a box of felt toys on an unassuming little girl playing by herself. His school was endlessly patient and loving, but I didn’t have any fixes for the problem. I felt like such a failure.
With the vast network of Nationwide Children’s, Brian and I attended regular behavioral therapy sessions, then moved to Mental Health services. I did an online Positive Parenting course; I plastered the walls with these visual charts to help Oliver identify his feelings and choose an action item to help him feel better. We did time out, we did time in, we did breathing. Shortly before diagnosis, I holed up one weekend with an armload of behavior books from the library. That weekend, I self-diagnosed Oliver with Oppositional Defiant Disorder and wallowed thinking how he could be so train his 4 years on Earth. I uttered more times than I can count, “What are we doing wrong? How are we such parenting failures?”
Yes, one year tomorrow, the confusion was replaced by grief. Deep, agonizing grief. However, this grief came with a community. We belonged. The confusion kept us in a state of “What are we doing wrong?”. The grief gave us names and faces of families who were celebrating the good moments, navigating the murky days, fighting with every fiber of their being for a cure, and selflessly sharing their experience to help others navigate this journey,
Receiving the clinical trial gene therapy treatment means follow up tests and visits to the hospital for Oliver.
Three really long days for Oliver this week. He was able to come home each evening and play and spend each night snuggled with us. He knows the hospital and let’s me know I missed the garage entrance. We have familiar faces there who know how to find Paw Patrol for him. And he’s charmed all the incredible nurses who know him from his blood draws. He says ‘thank you’ and ‘hello’ to the valets and doctors. And he still hates that bandage with the red dot, always refusing it and suggesting ‘maybe later’.
Our boy is tougher than nails and sweeter than pie!