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!!!

A New Year Dawns in the Desert

Welcome 2021!

On January 1st, Jeff and I take a drive to Dos Palmas Preserve, another CNLM habitat managed by our boss, Ginny Short…


Unfortunately, we never made it into the Preserve because the hike in was about a mile from the parking area and Jeff’s knee was not up to walking this far…

Fortunately, I captured this great picture…

Salton Sea

January Sunrises…

And Sunsets…


Jeff’s Pandemic Haircut… with his beard trimmer!

Not too bad…
Well, maybe not too good…
Oh my…
Yikes!

Snow-Covered Mountains…

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.

2020… Here’s Lookin’ At Ya

Most blog posts are ordered newest-oldest, but I am not your ordinary blogger. Actually, I am not a blogger at all. I am just me, “Wandering Gypsy Laurel” aka Grammy L, preserving an online journal of my adventures with my husband Jeff as full-time RVers for the past 5 1/2 years now.

So… here is a list of all my 2020 posts in chronological order. This is more for me, and maybe my family, than anyone else as this blog site serves as my online journal. And someday I will revisit our 5 years-plus homeless adventure living in a tin can:

December 2020 Fades…

Into 2021

The sun sets….

The moon rises…



The last day of the year shines down on the Preserve…

And in Ohio…

And in London…


And finally fades on the Preserve…


And an evening video chat with Texas ends our last day of 2020… Happy New Year to us all!
May 2021 bring us kindness, healing, and togetherness!

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 💜💜💜💜💜

Wander-less

A COVIDly Kept Year: Staying Put in the Desert

Luckily we visited John and Olivia in Austin by car in late January:


Across the pond my grandson, Reuben turned 6…

I sent him a video birthday greeting…


I met my cousin Jennifer on my Dad’s side in San Diego…

Unfortunately we met in the ICU before our Aunt Lynne passed. Jennifer and I share the same grandfather but different grandmothers.

We pulled mustard weed and bagged the flowers before they turned into seeds…


COVID-19 strikes…

And the Thousand Palms Oasis Preserve closes April 1st…


A special 5-way Mother’s Day phone call…

Texas, Ohio, California, and the UK (Cheshire and London)

Stomping palm fronds in the dumpster…

The wind blows the fronds down in huge piles. We pick up…
And halve them into dumpster-sized piles once a week…

Cleaning up and bagging cut piles of reeds at the pond…


“Streaming” for tamarisk…


Returning to the air-conditioned RV…

Sweat soaked clothes are dry in 15 minutes… 😳

We bought a new car…

Honda HRV…

A new sun hat from Yellow Mart…

The Stetson was the only one small enough to fit me!

We celebrated my 68th birthday…

Lunch at an outdoor venue…
And a cake!

A cloudy cloudy night…


Hikers find an abandoned kitten on the trail…

The hikers knocked on our door and we took her in…
And fed her 2 cans of tuna…
We named her Shadow and took her to the “no-kill” shelter for adoption…

Andy and Claire got married in France!

We watch the ceremony live at 6:00 AM California time…

A moon rise through the palms ushered in the last month of 2020…

And this is the last picture I took on December 31st…

Simone Pond

Of course we took day trips too…

Borrego Springs...

Green Valley Lake…

Geology Tour Road (Joshua Tree National Park)…

Oceanside, California…

Big Morongo Canyon Preserve…

Amboy Crater…


COVID COVID go away!

Let us see our kin today!

I’m Dreaming of a…

Nope, not a White Christmas…

We live in the Colorado Desert, part of the Sonoran Desert extending southeast from California to northern Mexico. The Colorado Desert is the lowest, hottest, most arid region of the Sonoran Desert. Wishing for snow is non-negotiable unless hell freezes over. By definition, a desert receives less than 6 inches of rain per year. The desert in Southern California barely receives 4 inches per year. 😳

So, taking liberties with Irving Berlin’s bestselling “White Christmas” song, please bear with my desert adaptation set to the tune of his iconic holiday classic:

I’m dreaming of some rain on Christmas,

So that flowers bloom and grow.

And later in the Spring,

The blossoms shall bring,

Colors delightful to show…

I’m dreaming of some rain on Christmas,

With every week that passes by.

May the mountains be snowy and white,

And melt down to make the desert bright.


And then… what to my wondering eyes did appear?
A sudden rush of dark clouds, And 8 raindrops right here!

Ah, every raindrop has 15 minutes of fame, to paraphrase Andy Warhol… Not long after Jeff and I did our happy dance, the sky’s canvas brightened into a muted sunset.


Merry Christmas! Happy Holidays! Whatever you prefer… I realize I say Merry Christmas but I really mean Happy Solstice that we celebrate. Somehow this whole year had been a winter solstice hanging over our heads. But, for now, let’s be children again and look forward to bright surprises dropped down the chimney or brought by Hanukkah fairies or shared on Zoom calls with our families.

Lots of Love to All, and to All a Goodnight!