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 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:

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

Jennifer & Brian

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

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.

All About Oliver

A Sanfilippo Story by Grammy L…

The end of 2019 was cruel to my family as we feared in October and then learned positively in November that my grandson, Oliver, is suffering from an untreatable and fatal genetic disorder.

I have not been able to write about and post pictures of my life as a wandering gypsy until recently. For a long time I felt guilty finding joy in nature.

But then I think about  my precious love-love boy so full of life, laughter, and love! And I live vicariously for him, soaking up all the experiences I dream about sharing with him.

I know Oliver doesn’t want me to be sad. And he is unaware of his fate. But this hurts sooooo bad! Why, why does this have to happen to him? This is so unfair.

My 2 other sons support me, of course, and I love them and their families to the moon and back!

Andy lives in London and I have an almost 6-year-old grandson, Reuben I have yet to meet (along with his silly brother, Henry, and baby brother, Otto, and cousin Logan). I hope to meet Reuben sometime soon.

John lives in Austin with Olivia who is writing her PhD dissertation. They have a wedding date set for April 2021. Jeff and I are visiting them the end of this month.

So…. My wanderlust journaling of retiring into full-time RVing will continue, however, I need to share another journey in my life now too. This journey is a tribute to Oliver James Kelly whose love and laughter has already touched the hearts of so many, and whose life has and will continue to make us better and richer persons just for knowing him.

Meanwhile, please, please check out the Cure Sanfilippo Foundation website!

And if you have a Facebook account, which apparently everyone has except me, please follow

Help us search for a cure for Oliver and his friends…

Thank you for supporting Oliver and his friends with your love and support and for helping us stay strong…

I will continue posting about Oliver. Writing helps calm me and keeps my mind busy. I need to share and remember all the silly, precious, and joyful moments our family has shared with our sweet boy and sassy Reagan so I can freshly imprint them in my mind and pull them up when I feel sad.

Meanwhile, we continue forging ahead thinking positive thoughts and enjoying every single moment even when we aren’t!

Sanfilippo Awareness Day

Every November 16th…

But in our family everyday is Sanfilippo Awareness Day.

Yes, that’s my grandson, Oliver, who was just diagnosed with this degenerative syndrome. One out of 70,000 babies are born with a change in their DNA that causes a very important enzyme to be made improperly or not at all.

Because Oliver does not have this critical enzyme, his body cannot breakdown and recycle natural cellular waste. His cells become clogged with toxic levels of heparan sulfate.

While every cell in his body is affected by Sanfilippo Syndrome, his brain cells suffer the most. The effects on the brain become apparent between the ages of 2 and 6 and are displayed by speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. Oliver is 4.

Imagine Alzheimer’s, but in children. Our precious little cutie boy will fade away and lose his skills and knowledge, eventually not able to talk, walk, and swallow.

Children with Sanfilippo Syndrome often pass away in their early teenage years.

This is my precious love-love boy.

We just recently received confirmation about this devastating and relentless diagnosis. My daughter-in-law, Jen, sums up the feelings of our family the best. We are gutted! It is so difficult to write about this and wrap my head around how cruel life can be. My son, Brian, needs me to be strong for him, but I am barely holding on some days. My heart is shattered into a million tiny pieces. I ache. It hurts sooooooo bad! I can’t fix this! I don’t want to accept this! But I will and I do. Our family is strong. Our motto is… We got this (even though we don’t want to got this.) The good news is that my love-love gil-gil, Reagan, is NOT missing this enzyme. I have to be strong for her as well and make sure that she is a part of all this.

So… for now I am still a wandering gypsy but I will finally roll into Bexley, Ohio at some point and stop permanently. Luckily we are back in Thousand Palms, California, outside of Palm Springs, where an airport is only 20 minutes away. I plan on becoming a frequent flyer and frequent visitor of Oliver and his family.

You can follow Oliver’s Tomorrow on Facebook.

Learn more about Sanfilippo Syndrome by clicking on this link.

This is so difficult and emotional to write about!