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,
She’s always got her eye on him—whether imitating him, finding a guaranteed laugh for her poop jokes, seeing if he’s going to, as he always does, give her his cookie, or dive in with a hug and kiss and wrestle when he’s having a rough moment. She’s got the heart and strength needed for a special needs sibling. (This is what my daughter-in-law posted about Reagan on her Facebook blog, Oliver’s Tomorrow on June 7th.) 💪💜💪💜
…dressing up as Elsa from the movie Frozen, while Big Bro is into Toy Story, Cars, and streaming Paw Patrol and Daniel Tiger on Amazon Prime.
…tutus, especially the ones Magaw (Oliver’s name for “Grandma” for Jen’s Mom and my sister from another mother) sews for her…
…drawing, coloring, painting whether on paper or herself…
…animals! (because they like her too)…
…being curious, as in “What happens if I poke this dinosaur’s tail in my nose?”
I observe Reagan growing, thriving, developing, just like Oliver… Until we knew something was not right. I will never ever forget my phone call with Brian in October of 2019 when he tearfully told me Oliver’s diagnosis. His words, “and he doesn’t even know,” still pierce my heart with a wound that will never heal. Our whole family’s world blew up! Sanfilippo Syndrome, a genetic disorder so rare and unheard of before, has now, unfortunately, become a household word. We can deal with rare, but not terminal with no cure on the horizon. Not Oliver, our precious love-love boy whose smile lights up a room, literally!
Reagan has been tested and she is not lacking that single, yes single enzyme necessary to break down long chains of sugar molecules in the brain that, when they accumulate in children’s cells, the cellular machinery cannot work properly. Bottom line… cells die and vital brain tissue is lost. With Sanfilippo Syndrome, Oliver’s little body doesn’t have the necessary enzymes to break down the sugar molecules called heparan sulfate. (curesanfilippofoundation.org)
Reagan will, sadly, surpass Oliver’s cognitive development. But, in the meantime, please find out more about Sanfilippo Syndrome and meet the rest of our “family”dealing with this fatal disorder at https://curesanfilippofoundation.org/
He’s off to a new school in the fall for Kindergarten!
CLCC (Christ Lutheran’s Children Center) and all the teachers and staff have been such a rock for us—always—and ever since his diagnosis. They have been endlessly patient, kind, and joyful, and serve from such a place of love. They hold such a beautiful part of Oliver’s journey—the part where his empathetic and silly personality was blooming. Where he sang his ABCs with conviction. Where he wanted to know every parent’s name and get their child the right water bottle. Where he touched every photo every time he walked those halls. Where he easily played with other kids. Where he was just a little boy with a congested nose who was a little delayed jumping.
Oliver, sweet boy, your story isn’t written. Here’s to pre-K graduation, and the next graduation, and the next, and the next. I’m so proud of you. I am so honored to be your mom.
Here’s my little love-love boy! Due to the Covid-19 pandemic, his graduation was a drive-through event. Dad decorated the car!
His pudgy little face is from the prednisone that he is taking after participating in a clinical trial treatment for Mucopolysaccharidosis (MPS) IIIB, known as Sanfilippo Syndrome. On April 3rd Oliver received a gene transfer by way of a virus injected intravenously. Prednisone is a corticosteroid that decreases the immune system’s response to various diseases. We want Oliver’s body to welcome this gene that makes enzymes needed to break down sugar molecules collecting in his brain. The build up of used heparan sulfate (one type of sugar molecule) in his brain cells affects his growth, mental development and behavior, and damages his little organs. The trial dosage is a treatment, not a cure. There is no cure. Please go to https://curesanfilippofoundation.org/ to learn more about this life zapping genetic disorder. (Yeah, it’s heart-wrenching…)
I am so proud of you, Oliver! And I am honored to be your Grammy L. You are an incredible little super-boy who lives life in a big way with a big smile and a big heart. Here’s to all of your tomorrows!
So, speaking of virus, I am conflicted about flying to Ohio because of Covid-19. I want to, oh, I want to! But I don’t feel safe, especially now that more and more states that have reopened venues are experiencing a rise in coronavirus cases. Some states (NY, NJ, and CT) are requiring travelers, arriving from states with an upsurge in new cases, to quarantine for 14 days. California is one of these upsurge states and, yep, that’s where we are locked down. Is driving the RV across the continent a solution? I just don’t know. I just don’t know… My family can use my help, for sure. But will I place them in harm’s way? Will I place myself in harm’s way? I wear a mask and socially distance but I cannot trust others, who have become more complacent about this pandemic, to do the same for me.
In the meantime I send videos and second guess and reconsider and sleep on my travel decisions… I mean I have a love-love family in Ohio that I miss… Soooooooooo much!!!!! The last time I visited was in December. Besides Oliver, there’s Brian and Jen (his parents) and my granddaughter Reagan Rose who is almost 3 going on 13. Yikes! She too has a big personality. The whole family is one big steroid pumped up on love, laughter, and living life! And freezing the joy…
It finally happened! Oliver pre-tested, tested again and again, qualified for the clinical trial dosage of ABO-101 and thanks to Dr. Kevin M. Flanigan (who jumped up, down, through, over, and under hoops to make this happen during the COVID-19 pandemic no less) Oliver checked in to Nationwide Children’s Hospital in Columbus, Ohio.
I knew this was a possibility as Jen and Brian sat on pins and needles waiting for the green light as the trial dosage shipped from the U.K. , arrived in NYC, and was held up in customs. The light remained yellow.
And then it turned green!
Text messages started dinging…
I was shocked, deliriously happy and overcome with love…
And in a private text I said…
I can’t help being Grammy L, the cheerleader for my family…
Sanfilippo Syndrome Type B, also known as mucopolysaccharidosis type IIIB (MPSIIIB), is characterized by the body’s inability to break down large sugar molecules called mucopolysaccharides, or glycosaminoglycans.
In patients with MPSIIIB, gene mutations result in a marked decrease in NAGLU enzyme activity, which leads to an accumulation of heparin sulfate in the brain and other organs, as well as progressive brain atrophy.
Essentially, ABO-101 is a virus that can cross the blood brain barrier after intravenous administration.
Dr. Flanigan is the trial’s principal investigator and Director of the Center for Gene Therapy at Nationwide Children’s Hospital.
“We are especially pleased to see reductions in several key biopotency markers, including the reductions in cerebral spinal fluid, urine and plasma heparan sulfate and normalization of plasma NAGLU enzyme activity at days 7, 14, and 30 post-transfer, added Flanigan, also a professor of pediatrics and neurology at The Ohio State University College of Medicine.” (sanfilipponews.com, courtesy of Jose Marques Lopes, PHD)
Jen posted this message on the eve of Oliver’s birthday…
Tomorrow (4/2) is Oliver’s 5th birthday. I imagine I’ll be a bunch of emotions being that it will be his first birthday since his diagnosis. Prior to COVID, we had been staying away from new environments to keep Oliver as healthy as possible, so we were crawling at the walls even before this quarantine.
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.)
If you could, I’d love to show him a bunch of videos of people singing him happy birthday. Whether you post here, tag me, or email me a link, or text me a video, it’d be such a treat for him.
Thank you for all the love ❤️
So, just saying… whether you know Ollie or not and you feel like sharing a little happy birthday song with him today, go for it! You’ll make his day, I guarantee it! If you have a Facebook account go to Jennifer Kelly’s Oliver’s Tomorrow. You can also email me at firstname.lastname@example.org and I will share it with my grandson. (I promise not to view it!)
So, since our family cannot physically be with Oliver today due to his upcoming trial dosage treatment and the COVID-19 shelter in place, my son, John, suggested we send our own birthday videos to Oliver. I wish I could share the one Jeff and I made… you’d get a good laugh! But alas, I cannot upload videos into my site.
Here’s the script (yes, I have taken part in the whose birthday is it game in years past…)
Here are some highlights…
Jeff’s stoic side-kick role makes me laugh! Thank goodness, I didn’t wet my pants!
Yes, I love Oliver! He is pure innocence and love and has no clue how Sanfilippo is compromising his life. He is more than Captain Hugs to me. He is my superhero. He inspires me to live fully and fearlessly.
Brian reports the total amount raised for Cure Sanfilippo Foundation… almost $23,000!!!
Together, with your overwhelming help and love for Oliver to help fight Sanfilippo , we sold 370 tickets, and through the T-shirts, the happy hour, the suite participants and other extremely generous donations we raised. . .
And so, Oliver and his entire family want to send a personal ‘THANK YOU, THANK YOU, THANK YOU!’ for your unbelievable support at the Columbus Blue Jackets hockey game. Park Street Tavern was packed, the seats were packed and oh my were there so, so many people wearing white shirts out there in support for him and all of the children with Sanfilippo. It was really a special night and I know everyone had fun. Jennifer and I were so touched and we were excited to talk with as many of you as we could. We couldn’t go more than 10 feet without running into one of the supporters of Oliver’s Tomorrow.
From here, look for periodic updates on our journey with Oliver. He is cooped up here at home with us for the next several weeks (as many of you can understand and relate). So far he is successfully going through the qualifications for the clinical trial which may only be a few weeks away. We are excited and anxious for the date to get here. Indeed, these are unique times for everybody. We hope you will have a chance to meet Oliver down the road and get a chance to see how strong and quick with a smile he is. We are so proud of him.
So stay safe and healthy and enjoy everyone you are around and enjoy every single day.
Jennifer Kelly, Oliver’s Mom and my daughter-in-law shared this post on Oliver’s Tomorrow…
So much to be thankful for this week. Oliver’s sweet classmates at Christ Lutheran’s Children Center made him a cape for Superhero Week. It’s a daily gift knowing that he’s loved by so many wonderful people.
Here he is as Captain Hugs! “His super power is always having a hug for friends in need!”
We wrapped up the week with “Parent’s Night Out” at Jeffrey Mansion and raised $1,130 for Cure Sanfilippo Foundation! My love and appreciation to:
Kris Olson Tann
for their incredible ability to plan, rally, and run! Thank you to all the parents who entrusted us with their sweet kiddos, neighbors who donated supplies, everyone who helped spread the word, and to all the big kid helpers!
Now, time for me to go snuggle with Captain Hugs… 😘😘