All About Oliver (and his family)

A Sanfilippo Story by Grammy L

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…

Of course the stock piling includes Larabars for Oliver!

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.

Happy Birthday, Oliver!

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…

He grew tall too! His little face is puffed out from the steroids he had to take post clinical trial infusion.

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…

Oliver, Zane, and Reagan
Oliver and Aidan, the other next door neighbor…

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…

Reagan doesn’t look very happy, sandwiched between her dad and her brother!

The Columbus Zoo…

Candlewood Lake…


Oliver started Kindergarten…


Reagan started pre-school after “graduating” from Ms. Kelsey’s Day Care…

Reagan’s first day and last day at Kelsey’s

The upstairs bathtub overflowed and the kitchen ceiling became a shower…

But as Jen said in her post, they are still smiling… wait, where’s Brian?

Follow-up testing 6 months after Oliver received the gene therapy procedure…

#TougherThanNailsSweeterThanPie

Reagan turned 3…

3 going on 13!

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 Byers family

“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…

Jen wrote about the day before the diagnosis.

And the day of the diagnosis

And the day after

Brian shared his thoughts too

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!

Oliver and Reagan sitting in Kelsey’s front yard.

The “village” of North Cassingham Road is also amazingly GOOD and LOVING and SUPPORTIVE.

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…


The Superhero Project creates Captain Hugs…

aka… Oliver!

Find out more about the Superhero Project…


A COVID Christmas…

And 2020 came and went in a COVID blur that kept us all apart physically… but not in our 💜💜💜💜💜

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