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Newborn Screening for Krabbe disease in North Carolina

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 Our son, Thomas, was born on September 21, 2015. In February 2016, 5 months later, Thomas was diagnosed with a fatal disease known as Krabbe disease. On Wednesday July 12, 2017, our son Thomas passed away due to the progression of this disease. Our hearts are broken.
At first, Thomas seemed to be a "normal" baby, smiling, looking at us, flaring his hands and feet around, you know, what a normal baby does. As time went on, we knew Thomas was not a "normal" baby. He would cry inconsolably. We were told that Thomas was "colicky" and it would eventually pass. Well...It didn't pass. Thinking Thomas had reflux, he was put on Similac Alimentum. His crying persisted.
Thomas was not meeting his milestones: holding his head up, rolling over and holding himself up. He also quit eating and was losing weight. We took him to the pediatrician and he was admitted into the hospital. During this weeklong hospital stay, Thomas was put through so much for a 3 month old. It was hard to see my little son getting a NG tube shoved down his nose so he could eat, IV placed in his little hand, blood being taken from his little arm and nurses and doctors constantly waking him up to examine him.
About 2 weeks after going home from the hospital, we received a call from his pediatrician. Thomas' blood results were back, he was officially diagnosed with Early Infantile Krabbe Disease. We were told this over the phone....yes...over the phone. This news was devastating. Thomas was back in the hospital to replace his NG tube with an G tube placed in his stomach. The reality that our little Thomas was never going to be an active little boy set in.
During Thomas' short life, we watched our courageous son slowly lose his ability to laugh, to smile, to breath on his own, to swallow, to control his eye movement, and to move his head arms and legs. Thomas was on 11 different medications at the time of his death, 4 of which were narcotics to control his breathing and seizures.
Krabbe is a rare, fatal genetic disorder that affects the central and peripheral nervous systems. Children affected by Krabbe suffer greatly and typically do not live beyond their second birthday.

My heart breaks for our son, Thomas, and for children who are born here in North Carolina and not given a fair chance at a healthy life. Sadly, I know of at least 4 families (5 including Thomas) that have watched their children slowly die , very recently, due to this disease, right here in North Carolina.
When Thomas was diagnosed with this disease, we were devastated to learn our son would not be with us for long. What makes this news even worse is to find out that Thomas could have been tested, and treated, for this disease at birth and wasn't. Here, in North Carolina, Krabbe is NOT on the newborn screening list. WHY? Why does North Carolina not screen for this disease when one of the leading physicians on Krabbe is right here in North Carolina, Dr. Joan Kurtzberg at Duke University?

For years, thousands of children have died and thousands more have become permanently disabled because they were not screened for all possible diseases at birth.
You can prevent other children from needlessly suffering by sponsoring an amendment to the current newborn screening laws for North Carolina. Like many other diseases, Krabbe Leukodystrophy is only treatable if diagnosed before the child is symptomatic. Cord blood transplantation has proven for many to be a lifesaving treatment that can give children with Krabbe the potential for a healthy life.
I am asking you to advocate for expanded newborn screening in North Carolina and that you sponsor legislation to add Krabbe and five similar disorders to its newborn screening panel. These Lysosomal Storage Disorders can be cost effectively screened together and must be diagnosed early to save children's lives!

I appreciate your consideration on this life altering issue and look forward to our future correspondence.


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