Caregiver Stories - Cecelia Stearns

Cecelia Stearn's story began when her undiagnosed daughter, Danielle, almost died giving birth to her twin sons. Though their journey has been bumpy, and at times scary, Cecelia, Danielle and the twins, Matthew and Jonathan, are finding their way by seeking out the support and services they need and learning to take life one day at a time.

Cecelia and her husband, who are semi-retired and self-employed in Silicon Valley, have relinquished the typical “golden years” to care for their daughter and grandsons, which they have been doing since the twins were born with congenital myotonic dystrophy. The boys are still very needy. At age 12, they’re still in diapers and Jonathan cannot speak words, though he does find ways to communicate. Matthew is learning but he’ll never be a strong speaker, according to Cecelia. Danielle, who has DM1, has progressed slowly. She has extreme gastrointestinal issues, daytime sleepiness, and has difficulty going up stairs. Her hand grip has weakened and she has occasional muscle cramping but she’s still mobile on her own.

“My advice to people with a child who has congenital myotonic dystrophy would be ‘do not assume that your child’s difficult beginning is a reliable indicator of what lies ahead,” Cecelia says. “There’s no upside to thinking the worst. Being able to adjust is the best thing anyone can do. Educate yourself, find the best doctors and support. And don't let the disease become all there is in your life.”

“You just do what you have to do."