Lucas: Fighting the Good Fight

Mothers will tell a pregnant woman that how her baby acts in the womb is a pretty good predictor of the child's personality.

For Lacey Friedman, carrying her son Lucas through a troubled, shortened pregnancy was only the beginning of the difficulties that lay ahead for her baby boy. While Lacey’s doctors detected heart, brain, and kidney anomalies in utero, it wasn’t until Lucas was born that she learned he had CHARGE syndrome.

THE DIAGNOSIS

Affecting most organs of the body, this rare genetic disorder occurs in approximately 1 in 10,000 births worldwide. The term stands for: Coloboma (eye), Heart defects of any type, Atresia (choanal), Retardation (of growth and/or development), Genital anomaly, and Ear anomaly.

Like many kids with CHARGE, Lucas is deaf and has a variety of medical issues that affect his sight, swallowing, growth, balance, breathing, and behavior. Despite being blind in one eye, this curious 11-year-old eagerly takes in the world with his big, brown eyes. He is impressively present and alive, and continually inspires those around him with his confidence and perseverance.

Because CHARGE encompasses a range of birth defects, it's difficult for doctors to predict how a child will fare. Some with fewer and more minor defects grow, receive treatments, become medically stable, and learn to overcome challenges and developmental delays. For others, the medical issues are too profound.

FAMILY-CENTERED CARE

When he was two years old, Lacey brought Lucas to Children’s Oakland for what would be his second open heart surgery. She recalls how the doctors and nurses welcomed them with open arms when they first arrived, and how they have stood by them ever since. Through hundreds of doctors of appointments with over a dozen medical specialists, Lacey has consistently felt like a respected partner on her son’s care team. “They let me, as a mom, show my expertise in caring for Lucas,” she shares. “That has made all the difference.”

ANYTHING IS POSSIBLE

Above all else, CHARGE syndrome has taught Lacey to appreciate the little things in life. When Lucas took his first sip of water at age two and walked on his own just before age three, she stopped in awe. When he began to use sign language to communicate, showed her how to use an iPad, and finally swam across his pool at age 11, Lacey joyfully celebrated each accomplishment.

Over the years, Lacey has gone from wondering what kind of life Lucas was going to have to believing that anything is possible. This is a testament to the care that he has received at Children’s Oakland.

“Raising a child with severe special needs is one of the hardest things to do,” shares Lacey. “At Children’s, they do all they can to make it as easy as possible. The doctors and nurses go the extra mile to help all families in need, no matter what their financial situation.”

Caring for children like Lucas doesn’t just happen. It’s the culmination of decades of research. Supporting Children's Oakland invests in the good health of our children for today, tomorrow, and for years to come.

       
Patient with cochlear implants
       
Patient crawling.
       
Patient today, swimming and smiling.
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