A Sanfilippo Story by Grammy L…
Balloons, Bubbles, and Bedazzle
Oliver enjoys chasing and catching bubbles.
Oliver enjoys chasing and catching bubbles.
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…
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!
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!
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…)
Jen created a muscle and sensory area downstairs for Oliver and Reagan.
We ring in another new year filled with cautious hope that we can reunite with our families soonish.
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…
Jen updates the profile picture for Oliver’s Tomorrow on Facebook.
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!!!
“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.”
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.
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…
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.
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.