(May 14, 2023) - Happy Mother’s Day! Today, we celebrate and uplift the voices of the brave, incredible, and amazing moms within the Cockayne syndrome (“CS”) community who face hardships that no parent should ever have to experience. We CS moms are near and far, but it is the power of our collective global village, united in our love for our children and the arduous journey that we walk, that arms us with the fuel to face the incredible challenges and sorrow that lie ahead.
To all of the bereaved mothers, we send you our heartfelt love, our arms wrapping you with comfort. We are thinking of you, always, and your beautiful children who passed too soon. We remember with you, and we are inspired by your strength, your love, and your dedication despite all that you have faced and continue to experience. Your journey of motherhood will always inspire us. On this Mother’s Day, we honor you.
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Let’s meet some CS moms!
Tarah and Tristan
Tarah is a renowned poet and author, and a loving mother to her son Tristan, age 19, who she considers to be her best friend. Tarah has written a poem to reflect what it is like to parent a child with Cockayne syndrome, words that will likely resonate with so many of us in the community.
Within the folds of joy
Is tucked away
The grief of uncertainty
The futures that
Should’ve held the
Men and women our
Children were meant to be
We carry the burdens
With smiles on our faces
And affliction in our hearts
Among the vast spectrum
of sorrow and elation
Because these are our children
Despite the present, the
Past or what lies ahead
Because love is what keeps
Courage afloat and a
A parents plight
Will always be
Our children’s happiness both
The ultimate sacrifice and gift
Regardless of the outcome
The fight can never be lost on love
- Tarah Carrera Burrell
What does motherhood mean to you?
Christina and Ellie
Christina is the proud mom of fun-loving, adventurous sweetheart Ellie, 9 months-old.
“Being a CS mom is not something that I ever expected but has forced me to live in the moment and not take any second of any day for granted. Ellie has brought such joy to my life and has forever changed my outlook on what it means to be a mom. It has really helped me to write down the best memory of each day as a reminder of how lucky I am to be Ellie’s mom. Happy Mother’s Day to all of the amazing CS Moms.” - Christina
Sarah and Charlotte
Sarah is the superwoman advocate mother of Charlotte, an adorable, bright, and incredibly talented 1.5 year-old.
“As a proud mum of a child with CS, motherhood to me means being an ‘expert’ in CS (because sadly, you often are the expert in the room), being an advocate (to get Charlotte the help she needs in a system that is not quite geared for rare diseases) and getting used to the unknown.” - Sarah
Sophie and Noémie
Sophie is the loving mom of sweet and joyful Noémie, who is 12 years-old.
“Being a mother to a CS child is [an experience] filled with love, laughter, joy and hope. Noémie is a happy, smily little girl! It is also filled with sadness, grief and anxiety because we know what no parents should know. Our daughter is rapidly aging and there is no cure available. Will she still be with us when research[ers] finally find a cure? There is hope! There are days when everything is great and we can almost forget our child is different and fragile but [then there are] those other days when you don’t know if she is going to be there for another birthday, another Christmas, another summer...” - Sophie
Jo and Riaan
Jo is the lucky mom of 3 year-old Riaan, our organization’s indelible and scintillating inspiration.
“Motherhood is all the things I do to keep Riaan alive and happy, to keep a roof over his head, to keep him as stable as possible, his days full of laughter and adventure, and to nurture him back to health when he falls ill. It’s the ways I try to exercise his brain and body, and promote his growth and development. It’s the way I run to him when he wakes up crying from his nap. It’s the way I (try to) advocate for him wherever we are to ensure he gets the best of everything. It’s the way we sing songs together and laugh while playing made-up games like balloon volleyball. It’s our walks in the park. It’s how I miss him when I’m washing dishes and being annoyed I have to clean instead of hang out with him. It’s when I feel bad for scolding him. It’s the fight to do everything possible to get treatments developed and get good people equally committed to our cause because there is tangible hope. It’s the jarring, earth-shattering pain when I remember the shocking reality of his diagnosis, as the sands of time slip quickly through the hourglass. It’s how everything can change in a second, and all I’ll have left is memories. Motherhood is me, flailing around, trying to make and capture these memories, like precious butterflies, and place them in a jar so I’ll always have them. But I don’t want memories, I want him. It’s how it feels to cuddle with him, to lay my head on the pillow, my body ripe with exhaustion, my soul happy and complete to be with my child. It’s the pride I feel for him every day when I see pictures of him at school, what he’s done, what he’s achieved. It’s the knowledge that he is absolute perfection, he is my legacy, and he pushes me to do better. And most importantly, motherhood is a love that will follow us across eternity, no matter what happens.” - Jo
What’s it like to be a rare disease mom?
Stephanie and Danny
Stephanie is the caring, compassionate mother of cute, adorable, 3 year-old Danny.
“It took me a while to understand it myself, but I know now more than ever before that being Danny’s mom is the most wonderful thing in the world to me. Being a mom of a child with a life limiting genetic disorder is not easy but it is the most rewarding feeling when you see your child look at you with so much love in his eyes. I’m so proud to be his Mom.” - Stephanie
Anna and Violet
Anna is the devoted and dedicated mother to beautiful Violet, one of the funnest, most resilient, and energetic 4 year-olds around.
“Being a rare disease mom is a constant rollercoaster of hope and heartbreak, where every setback feels like a personal blow and every triumph is cherished with overflowing gratitude. It's a profound mixture of fear and fierce love, as you navigate the unknown, advocate tirelessly, and find solace in the small moments of joy amidst the overwhelming challenges.” - Anna
Happy Mother’s Day!
Give our moms the gift of hope by donating today to help fund the development of treatments for Cockayne syndrome at riaanresearch.org/support.