Two Fathers of Daughters with Batten Disease Created a Bill Which Would Fund Genetic Testing

Mike Jackson’s young daughter Evelyn was diagnosed with Batten disease after a neurologist suggested a genetic test which the family could take for free.

John Barclay’s daughter River passed away from the same disease due to an inability to receive that same test.

The two fathers, who had met on a Facebook group due to the serendipity of living in the same state, decided to advocate for a change so that no one else has to face this tragedy.

Without having even meet each other in person, these two fathers collaborated on a bill which would fund the genetic testing that John’s daughter didn’t receive in time.

River’s Story

Her father describes River as ahead of her class, brilliant, graceful, and beautiful. She didn’t show any symptoms until age four. But then she started experiencing seizures. Her doctor thought it was epilepsy.

The undiagnosed disease caused her to miss school and stop her extracurricular activities.

After she passed just before her 10th birthday, her father donated all of her medical devices to other children in need.

He grieved, he got mad, and then he acted.   

Evelyn’s Story

Evelyn also had no symptoms at first, but after she turned two, she stopped hitting milestones. Her dad said she seemed like a different kid. She stopped learning words and had new sensory issues. She also became violent.

Doctors thought she had autism until she began having seizures. A neurologist suggested that she get a genetic test using the program Behind the Seizure, which provides the testing at no cost.

Since the diagnosis, Evelyn has seen many therapists and has made a lot of progress.

About the Bill

The bill, called Evelyn’s Law (House Bill 1346) would require insurance companies to pay for the cost of genetic testing when children aren’t meeting developmental milestones. That means that it wouldn’t solely be for Batten disease but for any condition which may be impacting children.

The duo explain that despite the cost to implement this bill, it would pay for itself very quickly with saved ER visits, doctors appointments, ambulance rides, and more.

Thankfully, Barclay had a connection to Pat Sullivan, House Majority Leader, and he asked him to submit the bill. As a father himself, Sullivan was moved by the initiative. The bill has already been submitted to the healthcare and wellness committee.

Looking Forward

This bill needs public support to gain traction. The fathers’ explain that the more people who know about this bill, and the more people who discuss it, the more likely legislators are to act on it.

Unfortunately, COVID-19 has stalled things. But this father duo is determined to keep pushing until the bill passes.

You can read more about this bill and these families journeys here.

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