Ohio Sanfilippo Awareness Day

November 16th

Oops, we misspelled “Sanfilippo”…

On January 6, 2021 Governor Mike DeWine signed a bill declaring November 16th Ohio Sanfilippo Awareness Day. Our family created postcards to send out to friends of Oliver asking each one to just pass along the postcard to someone else to raise awareness of this terminal neurodegenerative rare disease.


Children are born with Sanfilippo Syndrome, but it is invisible until they start exhibiting developmental delays or regressions in their early years. It affects 1 in 70,000 children.

Oliver was 3 when Jen and Brian grew concerned about his behavior and reports from his preschool that he was falling behind. Jen checked out stacks of books about discipline and diet and signed up for parenting classes with Brian, convinced they were not good enough parents. Oliver qualified for physical and occupational therapy at school. He received speech therapy as well. Finally, they found out they were great parents. Oliver, however, was born with a single, yes a SINGLE gene defect in his DNA that causes his body to lack a necessary enzyme that breaks down heparan sulfate, a natural cellular waste. This build up of heparan sulfate gradually clogs his body and especially his brain with toxins that cause a cascade of detrimental effects and ultimately death in his early teens. And there is NO CURE! There is no FDA-approved treatment or cure. Clinical trials are happening and other treatment strategies are in pre-clinical research and require funding. (curesanfilippofoundation.org)


On July 5th our family had a “play date meet-up” at Wolfe Park in Bexley, Ohio with the founders of the Cure Sanfilippo Foundation, Glenn (Dad, Donor, and President) and Cara (Pediatrician and Assistant Professor) O’Neill. They are the parents of 11-year-old Eliza who was diagnosed in 2013 and her older brother, Beckham. Katie Walton (VP of Marketing for the Cure Sanfilippo Foundation) and her husband and 3 children attended as well. And 9-year-old, Reagan McGee with Sanfilippo and her parents Karin and Pete joined us as well.

I posted every photo I took because we celebrate every moment of these innocent children’s lives!


Sadly, Reagan McGee slipped away in her sleep 2 weeks later. Jen, Brian, and I attended her Visitation tearfully paying our respects to a beautiful little girl whose life was taken away by Sanfilippo Syndrome. And what do you say to her parents? I could only hug them tightly and cry. I made friends with two more Sanfilippo children while I was there. They were both several years older than Oliver. Austin was in a wheelchair, a beautiful boy who no longer could speak, but his eyes did all the talking. And there was Abigail, a feisty redhead… She had a feeding tube. Sanfilippo, you are so unkind and unfair! Damn you!


On August 14th we hosted our first Lemonade Stand to raise money for researching a cure for Sanfilippo Syndrome and we honored the life of Reagan snatched away all too soon by this cruel genetic fate.


Please help us share awareness for Sanfilippo Syndrome today!

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.”