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Tragic passing of 11-month-old paves way for “Dylan’s Law”

New law requires all newborns be screened for Krabbe disease, Pompe disease, and Hurlers syndrome.
Allen Devlin
Tragic passing of 11-month-old paves way for “Dylan’s Law”

New law requires all newborns be screened for Krabbe disease, Pompe disease, and Hurlers syndrome.

ACROSS SOUTH CAROLINA HEAD FULL OF BLUE EYES THIS IS THIS GORGEOUS MATTE AND MELISSA EMERY BROUGHT THEIR NEWBORN BABY DYLAN INTO THE WORLD ON NOVEMBER 5TH 2017. HE COULD ACTUALLY SMILED AND GIGGLED JUST EVERYTHING THAT EVERYTHING YOU WOULD THINK OF IT AS A NEWBORN CHILD, BUT FOUR MONTHS INTO DYLAN’S LIFE MATT, MELISSA COULD TELL SOMETHING WAS WRONG. YOU’RE GONNA KEEP HIS FISTS BALLED UP AS OTHER BABIES WOULD HOLD THEMSELVES UP DEALING WITH HEAD WITH DREW. DOWN TO THE LAYOFFS NUMEROUS DOCTOR VISITS LATER THEIR WORLD WAS SHATTERED. DYLAN HAD CRAB A DISEASE A SEVERE DISEASE THAT AFFECTS THE WHITE MATTER IN THE BRAIN. DOCTORS GAVE HIM 13 MONTHS TO LIVE THAT WAS FELT LIKE A HIT US, AND THAT WAS OUR LIFE. STOP RIGHT THERE MY LIFE CHANGING LIFE CHANGING OF BEING JUST FELT LIKE EVERYTHING STOPPED DYLAN PASSED AWAY ON OCTOBER 16TH, 2018 NOW 13 MONTHS SINCE HIS PASSING GOVERNOR MCMASTER CEREMONIOUSLY SIGNS A NEW LAW DYLAN’S LAW REQUIRING SCREENING FOR CRAB A DISEASE POMPE DISEASE IN HURLER SYNDROME, BUT THIS IS A BIG STEP FORWARD FOR THE STATE OF SOUTH CAROLINA, CAROLINA, BUT THIS THIS TECHNOLOGY THIS STANDING CAN BE USED ALL OVER THE ALL OVER THE COUNTRY WHILE THE DISEASE IS INCURABLE KNOWING SOONER CAN GIVE FAMILIES MORE PRECIOUS TIME WHERE WE STILL HAVE A HOLE IN OUR FAMILY. THERE’S A THERE’S A HOLE IN OUR HEART AND HOLD OUR FAMILY AND BUT THROUGH THIS DYLAN’S ALL WE KNOW THAT DYLAN’S LEGACY STILL AL
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Tragic passing of 11-month-old paves way for “Dylan’s Law”

New law requires all newborns be screened for Krabbe disease, Pompe disease, and Hurlers syndrome.
Allen Devlin
Gov. Henry McMaster ceremoniously signed Dylan’s Law into effect Monday at the Greenwood Genetics center. The new law will require medical professionals across the state of South Carolina to screen all newborns for Krabbe disease, Pompe disease, and Hurlers syndrome. Currently, all three genetic diseases have no cure, and usually result in the death of the carrier.Dylan’s law is named after Dylan Emery, a boy who was born with Krabbe disease on Nov. 5th, 2017. When he was born, he was not tested for Krabbe and his parents, Matt and Melissa Emery, thought he was a healthy baby boy.Things quickly changed four months into Dylan’s life, when Matt and Melissa first noticed something was wrong.“Dylan would keep his fist balled up. Where other babies would hold themselves up Dylan’s head would droop down to the left,” said Matt. “He was very irritable, and in his first 3 1/2 months of life he wasn’t, he was a very happy child.”Matt and Melissa began taking Dylan to see doctors across the upstate. After weeks of testing and examination, they were told that Dylan had Krabbe disease, a severe, rare, and fatal disease that affects the white matter of the brain. There is no cure, and doctors gave Dylan 7 months to live.The next several months for the Emery family were spent spending as much time as possible with Dylan and ensuring he was comfortable as the disease progressed.Five months after his diagnosis, Dylan passed away on Oct. 16th, 2018. He was 11 months old.“We still have a hole in our family,” said Melissa. “There’s a hole in our heart and a hole in our family, but through this Dylan’s Law we know that Dylan’s legacy is still alive.”While an earlier detection of Krabbe disease in Dylan would not have saved his life, it would have allowed for doctors to slow down the symptoms of the disease and provide a better quality of life for Dylan, possibly extending his life by months if not a full year.This new law has been created with the goal of giving newborns around South Carolina diagnosed with the diseases the opportunity at more time with their families while scientist around the country continue to work towards a cure.“It’s a step for Dylan’s legacy,” said Matt. “He’s not here on earth but he’ll leave his legacy forever.”

Gov. Henry McMaster ceremoniously signed Dylan’s Law into effect Monday at the Greenwood Genetics center. The new law will require medical professionals across the state of South Carolina to screen all newborns for Krabbe disease, Pompe disease, and Hurlers syndrome. Currently, all three genetic diseases have no cure, and usually result in the death of the carrier.

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Dylan’s law is named after Dylan Emery, a boy who was born with Krabbe disease on Nov. 5th, 2017. When he was born, he was not tested for Krabbe and his parents, Matt and Melissa Emery, thought he was a healthy baby boy.

Things quickly changed four months into Dylan’s life, when Matt and Melissa first noticed something was wrong.

“Dylan would keep his fist balled up. Where other babies would hold themselves up Dylan’s head would droop down to the left,” said Matt. “He was very irritable, and in his first 3 1/2 months of life he wasn’t, he was a very happy child.”

Matt and Melissa began taking Dylan to see doctors across the upstate. After weeks of testing and examination, they were told that Dylan had Krabbe disease, a severe, rare, and fatal disease that affects the white matter of the brain. There is no cure, and doctors gave Dylan 7 months to live.

The next several months for the Emery family were spent spending as much time as possible with Dylan and ensuring he was comfortable as the disease progressed.

Five months after his diagnosis, Dylan passed away on Oct. 16th, 2018. He was 11 months old.

“We still have a hole in our family,” said Melissa. “There’s a hole in our heart and a hole in our family, but through this Dylan’s Law we know that Dylan’s legacy is still alive.”

While an earlier detection of Krabbe disease in Dylan would not have saved his life, it would have allowed for doctors to slow down the symptoms of the disease and provide a better quality of life for Dylan, possibly extending his life by months if not a full year.

This new law has been created with the goal of giving newborns around South Carolina diagnosed with the diseases the opportunity at more time with their families while scientist around the country continue to work towards a cure.

“It’s a step for Dylan’s legacy,” said Matt. “He’s not here on earth but he’ll leave his legacy forever.”