All About Oliver

A Sanfilippo Story by Grammy L…

Little Sis

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.) 💪💜💪💜



She loves:

…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…

…swings…

…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/


All About Oliver

A Sanfilippo Story by Grammy L…

Oliver Graduates From Pre-Kindergarten

His Mom wrote on Facebook…

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…

All About Oliver

A Sanfilippo Story by Grammy L…

The Best Birthday Gift

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)


Oh, Happy Day!

All About Oliver

A Sanfilippo Story by Grammy L…

Happy Birthday Love-love Boy!

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 jernigal926@gmail.com 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.

All About Oliver

A Sanfilippo Story by Grammy L…

White-out for oliver

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. . .

$22,853!!!

Simply amazing!

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.

Love and endless thanks,

Jennifer, Brian, Oliver and Reagan

All About Oliver

A Sanfilippo Story by Grammy L…

Captain Hugs

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
  • Amy Solaro
  • Kelsey Haas
  • Michaela White
  • Janice Manheim
  • Jessica Kehn
  • Kara Braunreiter

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… 😘😘

All About Oliver

A Sanfilippo Story by Grammy L…

Rare Disease Day


My daughter-in-law, Jen, posted this message on her Facebook page Oliver’s Tomorrow:

On Rare Disease Day, here’s my favorite unicorn. I love you to the moon and back, Oliver, forever and ever.

Then she posted a sweet video that I cannot download. So, I captured as many photos as I could to share with you.


Well, I did my best capturing images on a video, but you can feel the big personality of Oliver and Reagan and Jen and Brian and how much they love each other. To view the video, go to Jennifer Kelly’s Facebook page and click on Oliver’s Tomorrow.

Oliver, you are the sunshine of my life!

Reagan, you are my moon and stars!


All About Oliver

A Sanfilippo Story by Grammy L…

It takes a village

Wow! writes Jen on her Facebook page Oliver’s Tomorrow.

We are so appreciative and have so many people to thank for this special evening. Thanks to Park Street Tavern for hosting happy hour…

…thanks to Columbus Blue Jackets and Huntington National Bank for helping us spread awareness, and to all the individuals who made this happen behind the scenes. Thank you to everyone who attended and to everyone who helped spread the word! We raised over $9,000 for Cure Sanfilippo Foundation!

Thank you for being part of our village, for loving Oliver, for sharing his story and his light, and for being part of our fight to save our son and cure Sanfilippo.

All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jen, has amazing friends! Meet Whitney Abraham,  a business and life coach…

When Whitney found out about Oliver, she told her fella coaches Stephanie, Simi, and Regan about him and they sponsored an event to raise awareness and funds for Sanfilippo Syndrome.

The picture above is from a clip of a video where all these wonderful warrior women are shouting, “We love you, Oliver!”


This Capture Confidence event in January was entitled, Modern Motherhood, open to busy women where the discussion centered around the challenges, tips, and tricks in managing life as a mother and professional. Women shared their feelings of comparison, guilt, and judgment, their struggles and wins with each other.

But this Capture Confidence event was a little bit different. Besides special guests, the purpose of this gathering was also in honor of their friend, Jen, and of course Oliver, as a fundraiser for Sanfilippo Syndrome. They put every red cent they made for this event to the Cure Sanfilippo Foundation to support Jen and raise money for a cure!


Here’s what Jen shared on her Facebook Page, Oliver’s Tomorrow:

My love and thanks to Whitney Abraham, Stephanie Hanna, Simi Botic, and Regan Walsh, Life Coach, for such a wonderful, candid evening – leading this full room of amazing women through conversations of motherhood, life, work, and mindset.

I reveled in the comraderie and felt we could have talked until dawn. I was touched by all the familiar, beautiful faces – thank you for coming out! Oliver gives his love right back at each and every one of you!


My Jen is a warrior woman! And Oliver is always going to know that he is loved beyond his family! How awesome is that?

All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jennifer has a Facebook page entitled Oliver’s Tomorrow. I invite you to connect with her on Facebook.

On January 14th she posted this:

This past week has been emotional.

Oliver’s school celebrated ‘100 days of school’ – a popular tradition in schools right now. Part of that tradition is an age-processed photo of the children.

How I would love to see Oliver, an old, wrinkled-faced man.

When Oliver was 2.5 years, we listened to “A is for Apple” and “The Animals Sounds Song” in an endless loop. We would dance and sing and run around the room, and get especially silly when Grammy L was visiting.

Out of the blue, he’s been asking to play these songs again. He observes, with that sweet Oliver smile, and let’s Reagan and I do the singing and dancing these days.

Ahh, yes! We were silly! Oliver and I snorted and mooed, acted like animals, and twirled and danced. All of the dance moves were choreographed by Oliver! My favorite move was running to the wall in the living room, slapping the wall, and returning to “our spot” as we anticipated the next verse.