Amber McCreary’s life has not been an easy one.

The 29-year-old Christmas baby was diagnosed as a toddler with lissencephaly, a spectrum of severe and rare brain malformations that affects developing fetuses. Her mom, Beverly Carr, has watched her daughter survive this disease for nearly three decades.

Both women are inspirational.

McCreary has required special treatment most of her life. She lost the ability to walk first, then she lost her ability to speak at around 12 years old. She still regularly endures seizures, but she continues to beat the odds. Most children diagnosed with lissencephaly don’t live past age 8. None have lived past 30 — yet.

Carr is planning a “big shebang” for McCreary’s 30th next year.

The strength it takes to continue to plan for your child’s future despite a debilitating disease is hard to imagine. She knows her adult daughter is like a baby trapped in a woman’s body and she understands the difficulties that lie ahead.

McCreary has aged out of most care options for people in her condition as most don’t live as long as she has. Her mom cares for her at her Center Township home, but she also receives care at a day program at Austin’s Place in Jefferson Township. A nurse helps out at night and, when needed, she receives treatment at UPMC Presbyterian.

It’s not an easy row to hoe on either end of this equation. Carr works to make sure her daughter always receives the care she needs and McCreary continues to persevere through the hardships associated with her illness.

It’s so inspiring to read about people who have heavy loads to bear, but who carry those burdens with strength, humility and love. It encourages us all to do better, to manage our hardships with more grace, to lift each other up.

May we all carry our loads as admirably as Carr and McCreary in the new year.

— KL