All About Oliver

A Sanfilippo Story by Grammy L…

The end of 2019 was cruel to my family as we feared in October and then learned positively in November that my grandson, Oliver, is suffering from an untreatable and fatal genetic disorder.

I have not been able to write about and post pictures of my life as a wandering gypsy until recently. For a long time I felt guilty finding joy in nature.

But then I think about  my precious love-love boy so full of life, laughter, and love! And I live vicariously for him, soaking up all the experiences I dream about sharing with him.

I know Oliver doesn’t want me to be sad. And he is unaware of his fate. But this hurts sooooo bad! Why, why does this have to happen to him? This is so unfair.

My 2 other sons support me, of course, and I love them and their families to the moon and back!

Andy lives in London and I have an almost 6-year-old grandson, Reuben I have yet to meet (along with his silly brother, Henry, and baby brother, Otto, and cousin Logan). I hope to meet Reuben sometime soon.

John lives in Austin with Olivia who is writing her PhD dissertation. They have a wedding date set for April 2021. Jeff and I are visiting them the end of this month.

So…. My wanderlust journaling of retiring into full-time RVing will continue, however, I need to share another journey in my life now too. This journey is a tribute to Oliver James Kelly whose love and laughter has already touched the hearts of so many, and whose life has and will continue to make us better and richer persons just for knowing him.

Meanwhile, please, please check out the Cure Sanfilippo Foundation website!

And if you have a Facebook account, which apparently everyone has except me, please follow

Help us search for a cure for Oliver and his friends…

Thank you for supporting Oliver and his friends with your love and support and for helping us stay strong…

I will continue posting about Oliver. Writing helps calm me and keeps my mind busy. I need to share and remember all the silly, precious, and joyful moments our family has shared with our sweet boy and sassy Reagan so I can freshly imprint them in my mind and pull them up when I feel sad.

Meanwhile, we continue forging ahead thinking positive thoughts and enjoying every single moment even when we aren’t!

Sanfilippo Awareness Day

Every November 16th…

But in our family everyday is Sanfilippo Awareness Day.

Yes, that’s my grandson, Oliver, who was just diagnosed with this degenerative syndrome. One out of 70,000 babies are born with a change in their DNA that causes a very important enzyme to be made improperly or not at all.

Because Oliver does not have this critical enzyme, his body cannot breakdown and recycle natural cellular waste. His cells become clogged with toxic levels of heparan sulfate.

While every cell in his body is affected by Sanfilippo Syndrome, his brain cells suffer the most. The effects on the brain become apparent between the ages of 2 and 6 and are displayed by speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. Oliver is 4.

Imagine Alzheimer’s, but in children. Our precious little cutie boy will fade away and lose his skills and knowledge, eventually not able to talk, walk, and swallow.

Children with Sanfilippo Syndrome often pass away in their early teenage years.

This is my precious love-love boy.

We just recently received confirmation about this devastating and relentless diagnosis. My daughter-in-law, Jen, sums up the feelings of our family the best. We are gutted! It is so difficult to write about this and wrap my head around how cruel life can be. My son, Brian, needs me to be strong for him, but I am barely holding on some days. My heart is shattered into a million tiny pieces. I ache. It hurts sooooooo bad! I can’t fix this! I don’t want to accept this! But I will and I do. Our family is strong. Our motto is… We got this (even though we don’t want to got this.) The good news is that my love-love gil-gil, Reagan, is NOT missing this enzyme. I have to be strong for her as well and make sure that she is a part of all this.

So… for now I am still a wandering gypsy but I will finally roll into Bexley, Ohio at some point and stop permanently. Luckily we are back in Thousand Palms, California, outside of Palm Springs, where an airport is only 20 minutes away. I plan on becoming a frequent flyer and frequent visitor of Oliver and his family.

You can follow Oliver’s Tomorrow on Facebook.

Learn more about Sanfilippo Syndrome by clicking on this link.

This is so difficult and emotional to write about!