Pulmonary Medicine
Patient Stories | Jerrica and Congenital Myasthenic Syndrome

Seeing with the Right Eyes: Jerrica's Story

Inside this little body is a smart and sassy girl who is fluent in sign language and quick with a smile.

Despite the limitations of her wheelchair, she loves to dance, swim and play. She’s opinionated and funny and  loves YouTube, Cher and video games.

But the amazing story of Jerrica Stone is one that nearly ended almost as soon as it began.

Barbara McClaren, RN (Jerrica’s mom): “It starts in Louisville, Kentucky. I was a nurse in the PICU, and Jerrica was a patient there. And my grandmother called me and asked me to check on her. She was the daughter of a family member.”

As a newborn, Jerrica wasn’t expected to live, and her birth parents were overwhelmed. But being in the right place at the right time changed everything. The McClarens already had two boys, and there circle was about to get bigger.

Barbara: “We made the decision to, ah, take her into our family. So I called Michael and I said, ‘It’s a girl!’ And he said, ‘What?’ And I said, ah, Jerrica coded and her parents have left and they’re not coming back and they gave her to us.”

Michael McClaren (Jerrica’s dad): “The way I looked at it, she wasn’t like directly related like a brother or sister or even cousin, she was a little bit further, but she was still family. And I was always brought up, sorry, family takes care of family. And I had been in to see her in the hospital and fell in love with her beforehand. But, ah, so it was no question to me. I was in all the way. It gave me the little girl that I’ve always wanted. So I’ve got two boys and I’ve got my little angel.”

That little angel had a rough start in life.

Barbara:  “Over the course of the first year that we had her home, she had dozens and dozens of hospital admissions and she lost a little bit and a little bit more each time. By the time she was the age of 3, they had placed her in palliative care.”

By 2013, they still didn’t know exactly what was wrong with Jerrica, but she wasn’t getting better. Her family was ready to put her in hospice. But they came to Cincinnati Children’s first, still looking for answers.

Hemant Sawnani, MD (Jerrica’s pulmonologist): “I will not forget the day that I saw her and I asked the family how what’s the diagnosis, why are we going into hospice? And they didn’t know. I said how can we do this without knowing a diagnosis? What if there’s a treatment?”

Dr. Sawnani was running a clinic that Friday and wanted to get to the bottom of Jerrica’s condition. He talked to a colleague, who thought it might be a rare genetic condition called congenital myasthenic syndrome, or CMS, which causes muscle weakness. So they ran tests.

Dr. Sawnani: “You know, Dr. Collins saw her one time and came out jumping like a 10-year-old boy, um, literally jumping, physically, saying, ‘This is the diagnosis.’”

Tests confirmed it, and by the end of the weekend doctors had a solution. It wasn’t hospice. It was medicine.

Barbara: “Within hours, we went from her being able to barely support a Kindle or an iPad and move her thumb – that’s all we had left was a thumb – and the next day, I have video of her when she picked her hand up, and she put a lollipop in her mouth. And we were just shocked. Oh my god, she moved. It was like flipping a light switch.”

Why hadn’t anyone been able to diagnose Jerrica before?

Dr. Sawnani: “It’s just not having the right eyes. You know, there’s a saying, ‘What the mind does not know, the eye will not see.’”

Barbara: “Coming here was the difference literally between life and death. I mean, had she not come for that particular appointment and Dr. Sawnani not asked her to speak with that particular physician, we would never have had our diagnosis, and she would have gone into hospice and died.”

Dr. Sawnani: “I tend to see children with a lot of muscle weakness and breathing issues related to that. And a large majority of my patients tend to progress. This is one of those that actually went the other way, which I think has a level of satisfaction that few others give me. Some of these children leave a very lasting impression on us at so many levels, this is definitely one of the highest-ranking kids in my mind.”