Sophie Kudler of West Hartford, whose sister has epilepsy, joined state Sen. Derek Slap to testify on a bill that would bring a new focus to sudden, unexpected deaths.
State Sen. Derek Slap (D-West Hartford) and West Hartford teen Sophie Kudler offered testimony Monday before the legislature’s Public Health Committee on a bill that would require the state medical examiner to track and collect information on sudden unexpected death in epilepsy, or SUDEP, which affects about one out of every 1,000 people with epilepsy.
Kudler, 16, testified in favor of the bill on behalf of her sister who is now 13 and who has had epilepsy – and daily seizures – since she was 3. There are 36,000 people with epilepsy in Connecticut.
A section of Senate Bill 1083 that would be known as “Halyn’s Law” received its public hearing Monday before the Public Health Committee. A portion of the bill is named after Wethersfield resident Halyn Murtha, who died in May 2019 at age 9 of SUDEP. The bill would require the state’s chief medical examiner to have at least one hour of training in SUDEP, which is the unexpected death of someone with epilepsy who was otherwise healthy.
Advocates are hoping that by collecting and studying such information, the number of deaths attributed to SUDEP will drop, much like the number of infants dying from Sudden Infant Death Syndrome (SIDS) declined considerably from 130 deaths per 100,000 in 1990 to 38 deaths per 100,000 in 2016 following the release of the American Academy of Pediatrics safe sleep recommendations.
“Even with the best medical care, regular doctor appointments, regular in-patient monitoring of seizure activity, and multiple medications that have led to excellent seizure control, my sister still could die of SUDEP,” said Kudler, who is a junior at Hall High School and who is now also serving as the legislative intern for the Epilepsy Foundation of Connecticut. “Epilepsy is chronic, sinister, and unpredictable. That is why Halyn’s Law is so important.”
“Sophie called me back in November to begin talking about the need for this bill, and we have been in touch ever since about the bill language and when she would have a chance to testify and speak in support of her sister and thousands of other Connecticut residents,” Slap said. “It has been a wonderful and enriching experience working with Sophie and the Epilepsy Foundation of Connecticut to bring this legislation to light and to see our young people advocating for a better world for their peers. Sophie is really making a difference with her heart and her intellect and her commitment to others.”
The bill received support Monday from a number of Connecticut citizens and organizations.
“This legislation before us, Senate Bill 1083, which emphasizes education amongst the medical examiner’s office, will lead to more accurate and uniform reporting of potential SUDEP cases amongst the epilepsy community,” said Michael Finley, who is the government relations advocate for the Epilepsy Foundation of Connecticut. “This will result in the collection of a critical body of data to help identify the causes and potential risk factors associated with SUDEP. Our ultimate goal is to make this data readily available to research institutions like the North American SUDEP Registry to help significantly lower the instances of the SUDEP amongst the over 36,000 individuals living with epilepsy in Connecticut. ”
“Halyn was diagnosed with epilepsy when she was just 1 year old. She endured thousands of seizures in her short life, multiple combinations of medications and many hospital visits where she was hooked up to EEG monitoring equipment for days trying to find a cure for her epilepsy. Along her journey, she was additionally challenged with learning delays and autism. Her life was challenging, but she was happy and had a way of spreading her unique spirit with the world,” said Halyn’s parents, Christopher and Victoria Murtha of Wethersfield.
“Like all parents, we want to see our children grow up to be healthy and happy, to protect them from harm, and to be a positive contributor to society. Halyn doesn’t have that chance to grow up and we couldn’t protect her from epilepsy. But she was happy, and this bill is one of the ways she can make a lasting contribution to society. Supporting the Chief Medical Examiner’s Office will help to provide appropriate training and support to their wonderful staff,” they said.
The committee has until April 7 to vote on the bill.
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