All About Oliver

A Sanfilippo Story by Grammy L…

A great birthday party with great friends!

Sunday April 4th, (yes it’s Easter Sunday) Oliver celebrated his birthday with his 3 special friends from school: Jack, Henry, and Zev…

…at Tree of Life Play & Cafe…

3708 Fishinger Blvd., next to Get Air trampoline park

And of course Reagan invited her special friend, Lily…


What a great place for a party! The slide and ball pit area let Oliver, Jack, and Henry bounce, climb, and run off steam. Zev really enjoyed the slide and was a good sport as the other 3 amigos kept corralling him. Oliver, who does not realize his own roughhousing, made sure to let Henry’s dad know, though, when Henry was out of control.


Zev’s mom was so touched that Zev was invited to Oliver’s birthday party. “This is the first birthday party he has ever been invited to!”



What a great birthday party! We even did a take 2 on singing happy birthday because Grammy L thought she was videoing the song, but, alas, oh, Grammy L wasn’t. Henry’s dad, Steve, (the same dad Oliver kept calling and finding and taking his hand to “tattle” on Henry), calmly said, “Let’s do it again.” So we did!


All About Oliver

A Sanfilippo Story by Grammy L…

HAPPY BIRTHDAY, DEAR OLIVER!

HAPPY BIRTHDAY TO YOU!

Oliver is 6 years old! He doesn’t quite grasp the fact that today is his birthday, we guess, since his party with friends won’t take place until Sunday, the 4th of April. We remember, a little sadly, how excited he was to wake up on his birthday and celebrate his special day in the past. “It’s Oliver’s birthday,” he would shout with a great big smile on his face. Today is different. Maybe on Sunday he will realize we are celebrating his birthday.

Later in the afternoon, Oliver attended the birthday party of Jacob, one of his friends from pre-school last year. It was held at a gym with sports areas. Jen said he had a wonderful time running around and throwing balls. The best part though was that Jacob and his friends played with Oliver. They chased him and joined him in the various areas as he flitted here and there the way he does. They INCLUDED and ACCEPTED him!

Sadly, this is not usually the case when Oliver is around kids his own age. They label him strange because he acts differently so they don’t engage with him and leave him all by himself. It’s not their fault. But maybe it’s time to start having conversations with neuro-typical children about all the Olivers of this world they have yet to meet. How can we explain that Oliver is doing his very best even if it looks different than their very best? As Oliver says, “hmmm… I KNOW!” isn’t this a lesson for us adults too? Hmmm… I KNOW I need to learn to practice this!

All About Oliver (and his family)

A Sanfilippo Story by Grammy L

A BUSY DAY IN MARCH…

Mom and Dad get their first dose of the Moderna COVID vaccine.


Mom works on the front porch project, installing the floor…


Frankie and Stephanie visit from ABA Therapy (Applied Behavior Analysis), an in-home service for Oliver.


Miss Kelsey visits Reagan…


Reagan has a “sleepover” with Grammy L downstairs…


A great day living and enjoying each moment! (Even if behind the scenes we are sometimes having difficult feelings…)

All About Oliver

A Sanfilippo Story by Grammy L

SHOWING OFF

Jen created a muscle and sensory area downstairs for Oliver and Reagan.


But the best snuggles of all are the ones at the end of the day in our jammies…

All About Oliver (and his family)

A Sanfilippo Story by Grammy L

We ring in another new year filled with cautious hope that we can reunite with our families soonish.

That’s right, Oliver… 2020 was a booger of a year!

2021

My New Year’s Resolution is to fly out to Ohio ASAP!

Meanwhile, here’s what’s been happening yesterday, today, and tomorrow with Oliver…


On January 6th, Governor DeWine signed a bill designating November 16th
as Sanfilippo Awareness Day in Ohio

Jen updates the profile picture for Oliver’s Tomorrow on Facebook.

“Every day given is reason enough for joy.” …Oliver’s Mom

Sundays at Magaw’s… (Jen’s Mom)

And Valentines (courtesy of Magaw) sent to me in California from Reagan and Oliver…

And here’s a shiny reflection from all the colorful stickers on the ceiling in the RV:


Speaking about Valentines Day…


Oliver’s Kindergarten school picture…


And finally, my longed for wish comes true! On March 16th I land in Columbus, Ohio and see and hug and play with my love-loves in person!


Jeff and I had received our first dose of the Moderna vaccine and I made an appointment for a rapid COVID test immediately upon landing in Hilliard, Ohio… I flew Southwest from Palm Springs to Phoenix to Columbus…

So good to be “home” with my family!!!

All About Oliver

A Sanfilippo Story by Grammy L

“I knew this day would come…”

Jen shares…

“I knew this day would come, and I know the day has long passed where Oliver’s younger sister Reagan has become the big sister. We often find ourselves asking Reagan to give Oliver a chance to answer questions on colors, letters, sounds, counting. I ask her to slow down singing her ABCs so Oliver can add a few letters to the song. These were all things he knew when he was two.

When he initiates play by taking her stuff, when he pulls and tugs and wrestles her with no sense of safety, she takes it in stride.

She says she’s a ‘capable girl’ – she has no idea the depth of her strength that she has and will continue to need. Her love for Oliver asks for nothing. They root fiercely for each other. They love fiercely for each other.”

All About Oliver

A Sanfilippo Story by Grammy


On January 6, 2021, Governor Mike DeWine signed House Bill 32, the larger bill that Senate Bill 275 was added to, recognizing November 16 as Sanfilippo Awareness Day in Ohio forever.

Woohoo Jen and Brian! This bill happened because of you.
You have so bravely been sharing the story of Oliver’s tomorrow.
And people have listened and responded in amazing ways!

In October 2019, Oliver’s Sanfilippo Syndrome diagnosis was confirmed. Our hearts stopped beating.

“Sanfilippo is a terminal, neurodegenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die. Simply put, it is like Alzheimer’s in children.” (Glenn O’Neill… Dad, Donor, and President of Cure Sanfilippo Foundation)

How could this be the fateful future for our love-love boy… a single gene defect? Genetics can be cruel. Oliver’s little body lacks one necessary enzyme… one! But this missing enzyme creates

a toxic buildup in every one of his cells. This toxic storage is especially harmful to his brain. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.

Our family cried, hugged, cried, mourned, cried, grieved, cried, collapsed, cried, reached out, cried, found support, cried, picked ourselves up, dried those tears and turned them into more controllable sniffles… and went into action mode sharing Oliver’s Tomorrow and spreading an awareness of Sanfilippo Syndrome.

At this time Oliver attended Christ Lutheran Children’s Center Preschool where the staff, teachers, and administrators sponsored a Sanfilippo Awareness Day on November 16th. The school called all the parents in Oliver’s class and purchased purple Sanfilippo shirts for all the children to wear. It just happened that Dave Salisbury, who works in government relations, had a daughter who attended preschool at Christ Lutheran. (I know what you’re thinking!) And yes, Dave got the ball rolling to expand the arena of Sanfilippo awareness from the community to the state of Ohio.

And this is where Frank Strigari came into the picture…

Ohio Senate Chief Legal Counsel

Frank and Brian attended high school together in Cincinnati and was in Jen and Brian’s wedding. (And now you get the bigger picture…)

Oliver’s diagnosis inspired Dave Salisbury and Frank Strigari to leverage their professional expertise to get November 16th officially recognized as Sanfilippo Awareness Day in Ohio. State Senator Stephanie Kunze agreed to sponsor the original bill, Senate Bill 275, having learned about Sanfilippo Syndrome a few years before at a local constituent’s lemonade stand fundraiser for Cure Sanfilippo Foundation. The cause touched her heart then and now she was inspired to follow her heart.

State Senator Stephanie Kunze (R-Upper Arlington)

Glenn O’Neill, Dad, Donor, and President of Cure Sanfilippo Foundation participated, via Zoom, in the virtual bill-signing ceremony, along with Jen and Brian.


”This bill is a great reminder of the power in every single action, every effort to spread awareness… Thank you to Dave, Frank, and Sen. Kunze for all the work you did to make this bill a reality… And to each and every one of you who keep spreading awareness about this terrible disease. Every action, every moment makes a difference. And it means the world to all of our families.” — Glenn O’Neill

Ditto that from Grammy L…


A few days later, Jen and Brian received a handwritten note in the mail from Governor DeWine.

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 💜💜💜💜💜