12 petitions

Update posted 2 months ago

Petition to Susan Martin, Bob Steinburg, Beverly Boswell, Howard Hunter, Shelly Willingham, Michael Wray, Michael Speciale, Gregory Murphy, George Graham, John Bell, Pat McElraft, Jean Farmer-Butterfield, Jimmy Dixon, Larry Bell, William Brisson, John Szoka, Charles Graham, Ken Goodman, Garland Pierce, James Boles, John Sauls, Robert Reives, Verla Insko, MaryAnn Black, Larry Yarborough, Bert Jones, Jon Hardister, Pricey Harrison, John Faircloth, Kyle Hall, Debra Conrad, Sam Watford, Allen McNeill, Justin Burr, Mark Brody, Rodney Moore, John Bradford, Sarah Stevens, Lee Zachary, Rena Turner, Dean Arp, Mary Belk, Linda Johnson, Harry Warren, Julia Howard, Jeffrey Elmore, Dana Bumgardner, Kelly Hastings, Jason Saine, Mitchell Setzer, Chaz Beasley, Tim Moore, David Rogers, Hugh Blackwell, Destin Hall, Jonathan Jordan, Josh Dobson, John Ager, Chuck McGrady, Cody Henson, Brian Turner, Michele Presnell, Mike Clampitt, Kevin Corbin, Jay Adams, John Fraley, Scott Stone, Andy Dulin, Shirley Randleman, Ronald Rabin, DON DAVIS, Jeff Tarte, Carla Cunningham, Kelly Alexander, John Torbett, William Brawley, Becky Carney, Susan Fisher, Beverly Earle, John Autry, Larry Pittman, Larry Potts

Newborn Screening for Krabbe disease in North Carolina

   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.  

David Jessee
40,934 supporters
Started 3 months ago

Petition to Bill McHugh, Andy Monroe, Lia Preuss, Caitlin Cox, Kai-leé Berke

Persuade the Tadpoles daycare app to send auto-notifications of absences to parents

Recently an acquaintance of ours accidentally left her 15-month-old baby in the car; she changed routines and forgot to drop the baby off at daycare and drove straight to work, kind of on autopilot. The child died in the heat. What safeguards can we put in place to make sure this doesn't happen to other children? No prevention measure is 100%. But many clever safeguards to lessen the risk have been proposed – putting a shoe in the backseat, sensors in car seats,  setting an alarm on one's cell phone, for example. Another relatively simple safeguard would be for daycares and childcare app providers to implement no-show policies. If a parent has gone on autopilot and forgotten to drop a child at daycare, a notification could be sent to the parent and coparent and a tragedy could be prevented.  Tadpoles is the app that our daycare uses that sends auto-notifications to parents at the beginning of the day ("child has been dropped off") and at the end of the day (what the kids had for lunch, what games they played, etc.) So our simple suggestion is this: why not ALSO send caregivers auto-notifications if a child doesn't show up? We have suggested to the Tadpoles app providers that they implement a no-show notification system but they have told us that they have no plans to do it right now. So please join us in petitioning Tadpoles to update their app with this feature. If they do it other daycares and app providers might just do it as well. If this measure saves just one child it will have been worth it.  Some of you might be thinking "well this would never happen to ME" and "only bad parents accidentally leave babies in cars" and "what kind of society do we live in that parents have to be reminded of their own children"? and "a good parent doesn't need a reminder." If these thoughts are going through your head I ask you to take a step back and ask yourself: is the principle of "but you shouldn't *need* a reminder" more important than saving a child from a horrific death? What kind of person are you if you elevate your disgust and judgment of frazzled parents above an opportunity to save babies from death and suffering? Bottom line – this happens to about 35 children a year. And whether it happens because parents are just bad parents is really irrelevant. I don't believe that only bad parents make this tragic mistake – I think it can happen to ANY parent given the right cocktail of sleep deprivation, autopilot, and bad luck. I am a good parent. I am a loving and careful parent. Yet I know what it is to be on autopilot and make mistakes. The only difference between me and other parents is that I have been luckier. But for the sake of argument, let's assume it's only bad parents who accidentally leave children in cars. Don't the children of bad parents deserve protection too? At the end of the day we can shame parents or we can save kids but we can't do both. "Only bad parents do this" is a dangerous and destructive narrative that is going to get more babies killed. Maybe if we start talking honestly about these tragedies we can save lives in the future. Maybe together we can encourage daycares, app providers, and car manufacturers to join us in finding solutions. Let's start with Tadpoles, which is a major provider of daycare auto-notifications. We can hope that other companies will follow suit.  

Kathleen Shriver
479 supporters