All About Oliver

A Sanfilippo Story by Grammy L…

Rare Disease Day


My daughter-in-law, Jen, posted this message on her Facebook page Oliver’s Tomorrow:

On Rare Disease Day, here’s my favorite unicorn. I love you to the moon and back, Oliver, forever and ever.

Then she posted a sweet video that I cannot download. So, I captured as many photos as I could to share with you.


Well, I did my best capturing images on a video, but you can feel the big personality of Oliver and Reagan and Jen and Brian and how much they love each other. To view the video, go to Jennifer Kelly’s Facebook page and click on Oliver’s Tomorrow.

Oliver, you are the sunshine of my life!

Reagan, you are my moon and stars!


All About Oliver

A Sanfilippo Story by Grammy L…

It takes a village

Wow! writes Jen on her Facebook page Oliver’s Tomorrow.

We are so appreciative and have so many people to thank for this special evening. Thanks to Park Street Tavern for hosting happy hour…

…thanks to Columbus Blue Jackets and Huntington National Bank for helping us spread awareness, and to all the individuals who made this happen behind the scenes. Thank you to everyone who attended and to everyone who helped spread the word! We raised over $9,000 for Cure Sanfilippo Foundation!

Thank you for being part of our village, for loving Oliver, for sharing his story and his light, and for being part of our fight to save our son and cure Sanfilippo.

All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jen, has amazing friends! Meet Whitney Abraham,  a business and life coach…

When Whitney found out about Oliver, she told her fella coaches Stephanie, Simi, and Regan about him and they sponsored an event to raise awareness and funds for Sanfilippo Syndrome.

The picture above is from a clip of a video where all these wonderful warrior women are shouting, “We love you, Oliver!”


This Capture Confidence event in January was entitled, Modern Motherhood, open to busy women where the discussion centered around the challenges, tips, and tricks in managing life as a mother and professional. Women shared their feelings of comparison, guilt, and judgment, their struggles and wins with each other.

But this Capture Confidence event was a little bit different. Besides special guests, the purpose of this gathering was also in honor of their friend, Jen, and of course Oliver, as a fundraiser for Sanfilippo Syndrome. They put every red cent they made for this event to the Cure Sanfilippo Foundation to support Jen and raise money for a cure!


Here’s what Jen shared on her Facebook Page, Oliver’s Tomorrow:

My love and thanks to Whitney Abraham, Stephanie Hanna, Simi Botic, and Regan Walsh, Life Coach, for such a wonderful, candid evening – leading this full room of amazing women through conversations of motherhood, life, work, and mindset.

I reveled in the comraderie and felt we could have talked until dawn. I was touched by all the familiar, beautiful faces – thank you for coming out! Oliver gives his love right back at each and every one of you!


My Jen is a warrior woman! And Oliver is always going to know that he is loved beyond his family! How awesome is that?

All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jennifer has a Facebook page entitled Oliver’s Tomorrow. I invite you to connect with her on Facebook.

On January 14th she posted this:

This past week has been emotional.

Oliver’s school celebrated ‘100 days of school’ – a popular tradition in schools right now. Part of that tradition is an age-processed photo of the children.

How I would love to see Oliver, an old, wrinkled-faced man.

When Oliver was 2.5 years, we listened to “A is for Apple” and “The Animals Sounds Song” in an endless loop. We would dance and sing and run around the room, and get especially silly when Grammy L was visiting.

Out of the blue, he’s been asking to play these songs again. He observes, with that sweet Oliver smile, and let’s Reagan and I do the singing and dancing these days.

Ahh, yes! We were silly! Oliver and I snorted and mooed, acted like animals, and twirled and danced. All of the dance moves were choreographed by Oliver! My favorite move was running to the wall in the living room, slapping the wall, and returning to “our spot” as we anticipated the next verse.

All About Oliver

A Sanfilippo Story by Grammy L…

Oops… I meant to post this quite a while ago!

The Columbus Blue Jackets hockey team is having a game day for Oliver Friday, February 28th. They play against Minnesota Wild. Portions of the proceeds from tickets purchased through bluejackets.com/oliverstomorrow will go to The Cure Sanfilippo Foundation to help fund a cure. Sanfilippo is described as Childhood Alzheimer’s and, with no cure at this time, is terminal.


My son, Brian, sent out this email:

Hello friends and family of Oliver!

First of all thank you, thank you, thank you for your love and support of Oliver.

We hope your new year is starting off healthy and happy! Oliver, himself, has started off 2020 in his usual good spirits. He is happy to be back in school with his friends and doesn’t miss his morning Larabar. He’s having fun playing with his sister, Reagan, and he’s constantly politicking us to watch Paw Patrol. While we anxiously await to see if he will be included in the clinical trial at Nationwide, we are doing everything we can to make sure his cognitive skills stay as sharp as possible and also get in as many of his classic, big, running-start hugs as we can.

But in the meantime, Oliver wants to invite you to a special night:

On Friday, February 28th at 7pm we are celebrating Oliver’s Tomorrow at Nationwide Arena at the Columbus Blue Jackets vs Minnesota Wild NHL game. The Blue Jackets have partnered with us to help us spread awareness and all children affected with Sanfilippo, especially MPS III B. To top it off, $10-$20 of each ticket purchased will go back to the Cure Sanfilippo Foundation!!

This is going to be an amazing event that will help spread the word and allow us to meet many of you in person. We are asking all in attendance to wear white to have a White-Out for Oliver.

Please check out this link to find out more if you are interested and to purchase tickets:

bluejackets.com/oliverstomorrow

So thank you all again and we hope to see many of you there.

Jennifer & Brian


bluejackets.spinzo.com


Unfortunately, Grammy L won’t be there, but I will wear white that day in honor of Oliver, his family, my family, all of our friends and the Blue Jackets for bringing attention to Sanfilippo Syndrome and for so generously sponsoring this fundraiser to help find a cure.

But I will especially be honoring all the children and their families who are living through this devastating experience! These are the warriors in the trenches. Thank you for having their backs!


To learn more about this syndrome go to http://curesanfilippofoundation.org

Howl at the Moon

Full Snow Moon

According to The Old Farmer’s Almanac, the Full Moon we see in February is called the Snow Moon because, on average, February is the snowiest month in the United States according to data from the National Weather Service.

In ancient times Native Americans looked to the Moon to track the seasons on a lunar calendar. So it makes sense that each month’s Full Moon was given a name.

Other February full Moon names include:

  • Shoulder to Shoulder Around the Fire Moon (the Wishram people of the Pacific Northwest)
  • No Snow in the Trails Moon (the Zuni of the Southwest)
  • Bone Moon (the Cherokee of the Southeast)… The Bone Moon meant that there was so little food that people gnawed on bones and ate bone marrow soup. (almanac.com)

Tonight we receive 2 gifts from the skies. First, the Full Moon begins to rise from behind the San Bernardino Mountains.

Later, the International Space Station passes overhead as the blue dot below.


More about the Moon

According to the short video from The Old Farmer’s Almanac website, still another name for the February Full Moon is the Hunger Moon because the snow made it difficult for native peoples to hunt and trap.

Full Moon names corresponded to seasonal changes, but country wisdom also describes the phenomenon of moon weather. The Full Moon brings frost in the Spring and the Fall and periods of extreme cold in the winter. Researchers have indeed found distinct correlation between a Full Moon and cloudiness, rainfall, and thunder. Weather records also confirm that the first few days after a Full Moon or New Moon tend to be rainy or stormy.

Other weather folklore related to the moon has to do with its shape, color, and position in the sky. For instance, when the New Crescent Moon holds its points or horns upward, it is able to hold water so a dry spell can be expected.

almanac.com

When the New Crescent  moon stands on its points or horns, precipitation will spill out.

almanac.com

Is it a Bird? Is it a Plane?

It’s the International Space Station!

One of our co-hosts, Ken, has a variety of interests. Besides speaking several languages, being an avid birder, and living in Alaska and Central America, he also tracks airspace traffic, including planes, helicopters, and even the International Space Station.

So, when he alerts us to the fact that the International Space Station will be heading over our horizon tonight and tomorrow, we eagerly await its arrival.

The Space Station starts its pass exactly at 6:59 PM, right on time.

Traveling  from the northwest to the southeast, it just suddenly appears out of nowhere. How cool! At first we wonder if we are really looking at it. It’s the bluish dot.

And then a brighter white circle…

According to spotthestation.nasa.gov, the International Space Station is the third brightest object in the sky when it passes into view. Visible to the naked eye, it looks like a fast-moving plane only much higher and traveling thousands of miles per hour.

This is amazing!

As it disappears from view after 5 minutes or so, I capture our RV and Tom’s, our neighbor, glowing under the palm trees.

Thanks, Ken! We will be back tomorrow evening for an encore sighting.