Pint-Sized Inspiration

For Sarah and Jason Edwards’ two daughters, Kennedy Krieger exhausted every option to give a definitive diagnosis for one, and help allay concerns about the other.

Sarah Edwards knew something was not right with her daughter Madison when she was only an infant. Madison was a beautiful child, but she was not engaging or babbling, or hitting developmental milestones. “I had a gut feeling something was not right,” recalls Sarah. “When you get that feeling, that maternal instinct…I just knew.”

When Madison was 15 months old, Sarah and her husband, Jason, brought her for an evaluation with Dr. Ryan Lee and other neurodevelopmental experts at Kennedy Krieger. After an extensive evaluation, doctors found delays in both language and problem-solving skills, and Madison was diagnosed with intellectual disability.

Doctors told them that Madison’s intellectual development would progress more slowly than other children her age, then plateau. Sarah and her husband were devastated.

“It was the worst day of my life,” Sarah says. “I felt like we were grieving the loss of our child. We were grieving her future, the life we thought she would be living.” But Sarah and Jason quickly turned their grief into action, finding Madison the therapy and services she needed.

When Madison was three, Sarah had a second child, Channing. As an infant, Channing, like Madison, began showing delays, and was not reaching developmental milestones. She contacted Dr. Lee and brought her in for an assessment at Kennedy Krieger.

On the first visit, Channing showed delays. “I felt sick to my stomach,” says Sarah. “I couldn’t believe we were going through this again.”

But on a second visit five months later, Dr. Lee tested Channing again. This time, Channing was above average, and showed no signs of delay. “It was a miracle,” says Sarah. “We were so thankful.”

Their concerns about Channing at rest, Sarah and her husband still struggled with why one child was healthy, while the other faced a lifetime of disability. Dr. Lee helped try to find the cause of Madison’s disorder, ordering numerous tests and exome sequencing to look for a genetic cause. They exhausted every option, but no definitive reason was found for Madison’s diagnosis.

“Madison’s family really searched for why this happened to them,” says Dr. Lee. “I admitted that I don’t understand why, but I provided some comfort and reassurance that although medical science hasn’t yet found a cure for intellectual disabilities, we are doing research and discovering new things daily. One day, we may be able to understand her specific intellectual disability.”

Despite not finding an answer, Sarah and Jason were deeply appreciative that Kennedy Krieger was willing to work with their family to figure out a cause. Dr. Lee also helped the family in getting Madison the intensive physical, occupational, and speech services she needed.

“We’re ecstatic with what we’ve been able to get from Kennedy Krieger,” Sarah says. “They are a huge blessing…Kennedy Krieger was so instrumental in helping with both of our daughters. We’re thankful that they were willing to go the extra mile.”

Having a daughter with an intellectual disability has enriched Sarah’s life in ways she never imagined and given her a new sense of purpose. Madison has inspired her to become a fierce advocate for children with developmental disabilities, dedicated to raising awareness and trying to bring more services to families who live on the Eastern Shore. Her hope is that with increased awareness, more children will get evaluation and treatment, and more research advances will be made in intellectual disabilty.

Both Sarah and Kennedy Krieger are intent on making the world a better place for children like Madison. “I want the world for her,” Sarah explains. And so do we.

“Madison’s family really searched for why this happened to them. I admitted that I don’t understand why, but I provided some comfort and reassurance that although medical science hasn’t yet found a cure for intellectual disabilities, we are doing research and discovering new things daily.”

– Ryan Lee, MD, pediatric neurologist and postdoctoral fellow

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