Danny's Dose: One family's fight to reform the state EMS system

2 years 11 months 3 weeks ago Monday, February 27 2017 Feb 27, 2017 Monday, February 27, 2017 7:05:00 PM CST February 27, 2017 in News
By: Nora Faris, KOMU 8 Reporter
loading

ROLLA - Determination, courage and spunk run in Danny Shelton's blood. But factor IX, a vital clotting protein, does not.

Danny has severe hemophilia B, a genetic bleeding disorder that causes factor IX deficiency. For hemophiliacs like Danny, bumps, cuts and bruises can cause excessive bleeding. More serious traumas, like car accidents, can quickly lead to severe hemorrhages or brain and organ bleeds.  

Despite his diagnosis, the spirited 6-year-old doesn't let hemophilia stand in his way. Like many boys his age, he scampers up trees, practices his baseball swing and embarks on lifesaving missions with his Transformers action figures.

But unlike many boys his age, he's part of a real lifesaving mission. Danny and his family are on a quest to change the state's EMS protocols so rare disease patients like him can receive the treatments they need during medical emergencies.

To control his hemophilia, Danny takes intravenous injections of blood clotting factor, sometimes multiple times a week. He knows how to administer the injection himself, and his 4-year-old sister is also trained. 

These injections boost Danny's factor levels, keeping him safe from routine scrapes and bruises. But in the event of a traumatic injury or a car accident, he would need an emergency dose of factor—fast.

When they learned of his diagnosis, Danny's parents took every measure to keep him safe in the car. Their efforts went far beyond just buckling up. They outfitted his car seat with a bright yellow headrest emblazoned with a medical alert, warning paramedics about his hemophilia. They anchored a backpack containing a dose of factor to his seat, confident that paramedics would see it and administer it at the scene of an accident.

They were wrong.

In June 2014, they learned that paramedics in Missouri—and across the country—have protocols that prohibit them from administering medications found in a patient's possession during an emergency.

For Danny, that meant he would have to be transported to a hospital in St. Louis or Kansas City to receive his dose of factor in an emergency. Even with a safe, effective dose of factor lying nearby, paramedics might fear the potential liability of using it. In an accident, they would likely send him to Cardinal Glennon Children's Hospital in St. Louis. In a situation where minutes matter, he would likely arrive too late, potentially having a cerebral hemhorrage or internal bleeding.

Here's an analogy: Imagine you have a small fire in your kitchen. Right beside you, there's a bucket of water. There's another bucket of water outside—same size, same amount of liquid. If you splashed the water from the indoor bucket on the flames, the fire would be extinguished almost instantly. But imagine you have to use the outdoor bucket to put out the fire. By the time you retrieve the bucket from outside, the fire has engulfed your kitchen, and the flames can't be suppressed with a mere bucketful of water. Similarly, by the time patients are transported to St. Louis or Kansas City, the medication that could have been their salvation on the scene is rendered powerless at the hospital. 

"If they go against the protocols, the paramedics could lose their jobs," Darlene said. "If they don't go against the protocols, a patient could lose their life."

When they learned about the protocols, the Sheltons met with their local EMS staff. They developed a personal emergency plan for Danny, familiarizing local paramedics with his condition. In the event of an emergency, paramedics understood they could administer Danny's dose of factor on the scene.

Now, the Sheltons are intent on changing the rules across the state to protect rare disease patients through a campaign called Danny's Dose.

"It's important to protect paramedics, and make sure they know they won't be liable for saving a life," Danny's father, Daniel Shelton said.

After more than two years of making phone calls, meeting with ambulance districts and talking to state legislators, the Sheltons say they hope a proposed bill could cure the flaws in the state's EMS protocols.

House Bill 226, sponsored by Rep. Tila Hubrecht, R-Dexter, would allow paramedics to administer patient-held prescription medications at the scene of a medical emergency. That bill's language is also included in Senate Bill 418 sponsored by Sen. Dan Hegeman.

Darlene said if the bill passes, it could benefit over 100,000 Missourians with rare diseases, and not just hemophilia, but other conditions like adrenal insufficiency and Von Willebrand's disease, another bleeding disorder.

She said patients with special medical conditions can still improve their emergency protection in the meantime. She suggests that patients speak with paramedics at their local ambulance districts and equip their vehicles with medical alert headrests.

 

 

 

 

 

More News

Grid
List
COLUMBIA - A public defender representing a Columbia man who plotted a terrorist attack has asked for a 15-year sentence.... More >>
1 hour ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 2:43:00 PM CST February 19, 2020 in News
JEFFERSON CITY – People from all around Missouri and lawmakers packed into a hearing room in the Missouri Capitol Wednesday... More >>
1 hour ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 2:22:00 PM CST February 19, 2020 in News
JEFFERSON CITY - State lawmakers on the House Elections and Elected Officials committee heard testimony on a bill that could... More >>
3 hours ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 12:59:00 PM CST February 19, 2020 in News
COLUMBIA - A Fulton man has been sentenced to 20 years in prison for a 2018 Columbia homicide. 30-year-old... More >>
3 hours ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 12:23:00 PM CST February 19, 2020 in News
FULTON - The State Technical College of Missouri is partnering with the Callaway Chamber of Commerce to provide the MoAMP... More >>
5 hours ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 10:55:00 AM CST February 19, 2020 in News
JEFFERSON CITY - Missouri Attorney General Eric Schmitt announced his candidacy to keep the seat Wednesday. Schmitt was appointed... More >>
5 hours ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 10:13:00 AM CST February 19, 2020 in News
Loxahatchee, FL – According to the national institute of mental health, nearly one in five people in the United States... More >>
6 hours ago Wednesday, February 19 2020 Feb 19, 2020 Wednesday, February 19, 2020 9:20:00 AM CST February 19, 2020 in A Brighter Tomorrow
FERGUSON, Mo. (AP) — The man suspected of shooting an off-duty police officer at a Walmart store in the... More >>
19 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 8:53:16 PM CST February 18, 2020 in News
JEFFERSON CITY - One Missouri advocacy group will show up in numbers to support its cause on Wednesday. Decoding... More >>
20 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 7:50:00 PM CST February 18, 2020 in News
COLUMBIA-- Lawyers for a Columbia businessman, Dimetrius Woods, are employing last ditch efforts to keep him out of prison. ... More >>
21 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 7:00:00 PM CST February 18, 2020 in News
MOBERLY - People in Moberly are excited about the announcement Plumrose USA made Tuesday. The company is set to bring... More >>
21 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 6:56:00 PM CST February 18, 2020 in News
BOONE COUNTY - A deer was saved today at Lake Chapperal, north of Hallsville, by The Boone County Fire Protection... More >>
22 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 5:21:00 PM CST February 18, 2020 in News
COLUMBIA - Columbia Police Chief Geoff Jones issued a statement on Tuesday about police transparency, following the release of a... More >>
23 hours ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 5:06:00 PM CST February 18, 2020 in News
JEFFERSON CITY - One lane of U.S. Route 54 in Jefferson City will be closed on Feb. 20. Missouri... More >>
1 day ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 2:59:00 PM CST February 18, 2020 in News
JEFFERSON CITY - Hundreds of Moms Demand Action members flooded the Missouri Capitol today wearing red in support of legislation... More >>
1 day ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 2:48:00 PM CST February 18, 2020 in News
MARIES COUNTY - Gary Martin Traver's Jr., the man recently arrested for an arson that injured six Vienna fireman in... More >>
1 day ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 2:39:00 PM CST February 18, 2020 in News
JEFFERSON CITY - A bomb threat to the Cole County courthouse Tuesday morning caused both the courthouse and annex to... More >>
1 day ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 1:06:00 PM CST February 18, 2020 in News
JEFFERSON CITY — If you rent in the City of Columbia, you might have better living conditions than some people... More >>
1 day ago Tuesday, February 18 2020 Feb 18, 2020 Tuesday, February 18, 2020 12:48:00 PM CST February 18, 2020 in News
Columbia, MO
Broken Clouds 39°
5pm 40°
6pm 37°
7pm 35°
8pm 34°