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.

All About Oliver

A Sanfilippo Story by Grammy L…

Oops… I meant to post this quite a while ago!

The Columbus Blue Jackets hockey team is having a game day for Oliver Friday, February 28th. They play against Minnesota Wild. Portions of the proceeds from tickets purchased through bluejackets.com/oliverstomorrow will go to The Cure Sanfilippo Foundation to help fund a cure. Sanfilippo is described as Childhood Alzheimer’s and, with no cure at this time, is terminal.


My son, Brian, sent out this email:

Hello friends and family of Oliver!

First of all thank you, thank you, thank you for your love and support of Oliver.

We hope your new year is starting off healthy and happy! Oliver, himself, has started off 2020 in his usual good spirits. He is happy to be back in school with his friends and doesn’t miss his morning Larabar. He’s having fun playing with his sister, Reagan, and he’s constantly politicking us to watch Paw Patrol. While we anxiously await to see if he will be included in the clinical trial at Nationwide, we are doing everything we can to make sure his cognitive skills stay as sharp as possible and also get in as many of his classic, big, running-start hugs as we can.

But in the meantime, Oliver wants to invite you to a special night:

On Friday, February 28th at 7pm we are celebrating Oliver’s Tomorrow at Nationwide Arena at the Columbus Blue Jackets vs Minnesota Wild NHL game. The Blue Jackets have partnered with us to help us spread awareness and all children affected with Sanfilippo, especially MPS III B. To top it off, $10-$20 of each ticket purchased will go back to the Cure Sanfilippo Foundation!!

This is going to be an amazing event that will help spread the word and allow us to meet many of you in person. We are asking all in attendance to wear white to have a White-Out for Oliver.

Please check out this link to find out more if you are interested and to purchase tickets:

bluejackets.com/oliverstomorrow

So thank you all again and we hope to see many of you there.

Jennifer & Brian


bluejackets.spinzo.com


Unfortunately, Grammy L won’t be there, but I will wear white that day in honor of Oliver, his family, my family, all of our friends and the Blue Jackets for bringing attention to Sanfilippo Syndrome and for so generously sponsoring this fundraiser to help find a cure.

But I will especially be honoring all the children and their families who are living through this devastating experience! These are the warriors in the trenches. Thank you for having their backs!


To learn more about this syndrome go to http://curesanfilippofoundation.org

All About Oliver

A Sanfilippo Story by Grammy L…

This story is more than Oliver! It includes his whole family… Jen, Brian, and Reagan… Great-Grandparents, Grandparents, Aunts, Uncles, Cousins, Friends, Neighbors, Employers, the Cure Sanfilippo Foundation, Extended Family, Casual Acquaintances, and all of our children under its umbrella… And you! Thank you for becoming aware of this rare genetic disorder that steals the future from Oliver and his friends. And for letting me share with you precious, joyful, and candid moments in Oliver’s life.


This is my sweet love-love boy and his family today:


You see a happy family. And, oh they are! Lots of love, laughter, and living in the moment!

But behind the scenes, what you don’t see are the sleepless nights, the increasing hyperactivity, and angry outbursts that Oliver cannot control. You don’t hear his speech becoming harder to understand. You don’t witness him falling behind developmentally.

It’s hard to imagine that Oliver’s sunshine will fade away before he has a chance to grow up.

But for every Oliver there are so many more children affected by this rare genetic and metabolic neurodegenerative disorder. Right now there are 87 more of his friends on the Cure Sanfilippo Foundation website alone. And this is only one website, albeit a powerful one!


Glenn and Cara O’Neill created the Cure Sanfilippo Foundation in 2013 within 2 months after their daughter, Eliza, was diagnosed with Sanfilippo Syndrome, at the age of 3.  Glenn left his position in the corporate world and Cara gave up her practice as a pediatrician.

Cure Sanfilippo Foundation does more than raising funds for research and the development of treatments leading ultimately to a cure. The Foundation is a support community for Oliver and his friends.

As co-founders, Glenn overseas the Foundation as a business and a parent. He is the voice of support, love, understanding, and information when contacting him with the gut-wrenching diagnosis of your child with Sanfilippo Syndrome. He embraces you and then goes into super-warrior mode. He’s got your back and never ever lets you forget this. He walks with you every step of the way. You are not alone ever. He cares and unites you with the other families.

Cara runs the scientific side of the Foundation by overseeing research grants, developing relationships with biopharma, and creating the improvement of clinical management guidelines to better inform physicians and drug development companies of patient and family needs.

Since its inception, Cure Sanfilippo Foundation has raised over $5.2 million dollars and funded over 14 research programs around the world.

Check out Cure Sanfilippo Foundation to find out all about Oliver’s friends and learn more about this life-limiting diagnosis.