A Sanfilippo Story by Grammy L…

Oliver Graduates From Pre-Kindergarten

His Mom wrote on Facebook…

He’s off to a new school in the fall for Kindergarten!

CLCC (Christ Lutheran’s Children Center) and all the teachers and staff have been such a rock for us—always—and ever since his diagnosis. They have been endlessly patient, kind, and joyful, and serve from such a place of love. They hold such a beautiful part of Oliver’s journey—the part where his empathetic and silly personality was blooming. Where he sang his ABCs with conviction. Where he wanted to know every parent’s name and get their child the right water bottle. Where he touched every photo every time he walked those halls. Where he easily played with other kids. Where he was just a little boy with a congested nose who was a little delayed jumping.

Oliver, sweet boy, your story isn’t written. Here’s to pre-K graduation, and the next graduation, and the next, and the next. I’m so proud of you. I am so honored to be your mom. 

Here’s my little love-love boy! Due to the Covid-19 pandemic, his graduation was a drive-through event. Dad decorated the car!

His pudgy little face is from the prednisone that he is taking after participating in a clinical trial treatment for Mucopolysaccharidosis (MPS) IIIB, known as Sanfilippo Syndrome.  On April 3rd Oliver received a gene transfer by way of a virus injected intravenously. Prednisone is a corticosteroid that decreases the immune system’s response to various diseases. We want Oliver’s body to welcome this gene that makes enzymes needed to break down sugar molecules collecting in his brain. The build up of used heparan sulfate (one type of sugar molecule) in his brain cells affects his growth, mental development and behavior, and damages his little organs. The trial dosage is a treatment, not a cure. There is no cure. Please go to https://curesanfilippofoundation.org/ to learn more about this life zapping genetic disorder. (Yeah, it’s heart-wrenching…)

I am so proud of you, Oliver! And I am honored to be your Grammy L. You are an incredible little super-boy who lives life in a big way with a big smile and a big heart. Here’s to all of your tomorrows!

So, speaking of virus, I am conflicted about flying to Ohio because of Covid-19. I want to, oh, I want to! But I don’t feel safe, especially now that more and more states that have reopened venues are experiencing a rise in coronavirus cases. Some states (NY, NJ, and CT) are requiring travelers, arriving from states with an upsurge in new cases, to quarantine for 14 days. California is one of these upsurge states and, yep, that’s where we are locked down. Is driving the RV across the continent a solution? I just don’t know. I just don’t know… My family can use my help, for sure. But will I place them in harm’s way? Will I place myself in harm’s way? I wear a mask and socially distance but I cannot trust others, who have become more complacent about this pandemic, to do the same for me.

In the meantime I send videos and second guess and reconsider and sleep on my travel decisions… I mean I have a love-love family in Ohio that I miss… Soooooooooo much!!!!! The last time I visited was in December. Besides Oliver, there’s Brian and Jen (his parents) and my granddaughter Reagan Rose who is almost 3 going on 13. Yikes! She too has a big personality. The whole family is one big steroid pumped up on love, laughter, and living life! And freezing the joy…