A Mother's Day Heartbreak
In Dedication to Riaan's Grandmother
by Richie DiGeorge, Co-Founder of Riaan Research Initiative
“Good morning, Riaan. It is 5:00 in the morning and grandma cannot sleep so I am watching the sun rise and I am thinking of you.
For some reason I can't stop thinking about you and your beautiful smile. That little side smile you always have.”
(May 13, 2024) - I want to start off by wishing a very Happy Mother’s Day to all of the moms out there, including and especially in the Cockayne syndrome and rare disease community. I want to wish a very Happy Mother’s Day to my wife Jo who works tirelessly to raise, mother, and caregive for our two beautiful boys Riaan and Jivan. I wouldn’t want anyone else in our corner advocating for Riaan.
I am also writing to share very sad personal news. My own mother and Riaan’s grandmother, Karin, passed away this past Saturday, the day before Mother’s Day, from an aggressive form of cancer. She fought for her life until the end, and it was an honor, and absolute heartbreak, to be there with her during her last hours and moments of life.
My mother’s earnest wish was to see a treatment developed for Riaan. She wanted to live long enough to witness that miracle: unfortunately, she did not. But in her name, we fight on.
“Well Riaan, the sun is up and the sky is blue, it's a new day dawning for me and you.
Be good for your mommy and daddy today. We love you to the moon and back.”
My mother was 69 years-old, and loved Riaan (and all of her grandchildren) with all of her heart and soul. She was the only one in the family who had heard of Cockayne syndrome before Riaan was diagnosed: she had watched a show called Mystery Diagnosis, and there was an episode on a family with two children with Cockayne syndrome (Interestingly, we have come to know this family now through the online support groups, and tragically, their two beautiful children have since passed). When we had told my mother about Riaan’s diagnosis, she said, very quietly: “I’ve heard of it. I’m sorry, I’ve heard of it. I can’t believe this.”
Growing up, my mother would always tell me: “I love you to the moon and back.” That was her saying. It was only fitting that when Riaan was born the first book she bought for him was the classic children’s story: “I Love You to the Moon and Back.” We’ve read it to Riaan so many times that the book has seen better days.
My mom desperately wanted to see her Riaan live, and would talk about it often, even as she left our world.
Not long after Riaan was born, we created an email account for him. Our plan was to send him messages, and then turn the account over to him when he was old enough. We thought it would be a good way to preserve memories, and that Riaan would one day enjoy reading our thoughts. I came across one of the messages my mom had sent to Riaan’s email account before he was diagnosed. Nothing captures her love for Riaan (and emojis) more so than her own words.
Mom, I hope you know that Riaan loves you too from the bottom of his heart, to the moon and back.
And in your blessed memory, I’ll continue reading your story to Riaan, always, and we’ll teach him how to ride a bicycle, in his own way. We’ll fly kites, and we’ll eat ice cream. Most importantly, we’ll work hard to get a treatment developed for your grandson so that he and other children with Cockayne syndrome can one day follow their dreams, and live the best and longest life possible.
I love you, Mom. Happy Mother’s Day.
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In my mother’s memory, we are requesting donations to Riaan Research Initiative to develop a gene therapy for Cockayne syndrome, work that is ongoing at the University of Massachusetts Chan Medical School. Donate directly at riaanresearch.org/support. Our current campaign has a goal of $150,000. We are at about $114,000 raised. If you prefer to donate offline including by check, please contact us at info@riaanresearch.org. Let’s work together to reach the finish line.
Thank you for your support.