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 foroliverstomorrow.com
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!