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

3 months 4 weeks 1 day ago February 27, 2017 Feb 27, 2017 Monday, February 27 2017 Monday, February 27, 2017 7:05:00 PM CST 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
FULTON — A 16-year-old girl is in critical condition after she was hit by a car Wednesday morning. Fulton... More >>
16 minutes ago June 28, 2017 Jun 28, 2017 Wednesday, June 28 2017 Wednesday, June 28, 2017 2:00:00 PM CDT in News
ST. LOUIS — Ryan Ferguson has settled a portion of his lawsuit against police, nearly four years after his 40-year... More >>
1 hour ago June 28, 2017 Jun 28, 2017 Wednesday, June 28 2017 Wednesday, June 28, 2017 12:44:00 PM CDT in Top Stories
KANSAS CITY (AP) — A Kansas City, Missouri , man is jailed on $150,000 bond after being accused of a... More >>
4 hours ago June 28, 2017 Jun 28, 2017 Wednesday, June 28 2017 Wednesday, June 28, 2017 9:43:53 AM CDT in News
CHARLESTON (AP) — A judge has dismissed an assault charge against a southeastern Missouri sheriff being investigated in the death... More >>
4 hours ago June 28, 2017 Jun 28, 2017 Wednesday, June 28 2017 Wednesday, June 28, 2017 9:22:00 AM CDT in News
COLUMBIA - As construction continues in the downtown area, workers are finding it difficult to be around. "It's making... More >>
18 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 7:57:00 PM CDT in News
COLUMBIA -The City of Columbia Public Works Department held an informal open house Tuesday, giving people a chance to ask... More >>
18 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 7:38:00 PM CDT in News
BOONE COUNTY - The Boone County Sheriff’s Department is investigating four burglaries this month in the Elm Tree area. Homes... More >>
19 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 7:13:00 PM CDT in News
JEFFERSON CITY (AP) — Th e Missouri Supreme Court says it's constitutional to commit sex offenders to secure confinement after... More >>
20 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 5:23:00 PM CDT in News
BOONE COUNTY - Sheriff's detectives arrested a 20-year-old Jefferson City woman Tuesday in connection with a shooting that wounded two... More >>
21 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 5:04:00 PM CDT in News
JEFFERSON CITY (AP) — Missouri appellate judges are reinstating descriptions of initiative petitions against right to work laws that were... More >>
21 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 4:50:02 PM CDT in News
JEFFERSON CITY - The "21st Century Missouri Transportation System Task Force" will meet for the first time Wednesday afternoon at... More >>
21 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 4:35:00 PM CDT in News
MONETT (AP) — A substitute teacher in southwe st Missouri has been ch arged with having sexual contact with a... More >>
21 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 4:30:41 PM CDT in News
CALLAWAY COUNTY – A proposed port in Jefferson City is one step closer to becoming a reality. The Callaway... More >>
21 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 4:22:00 PM CDT in News
JEFFERSON CITY - NAACP supporters rallied at the state Capitol to ask Missouri Gov. Eric Greitens not to sign the... More >>
22 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 3:58:00 PM CDT in News
COLUMBIA - The Missouri Foundation for Health has awarded $700,000 toward the planning, construction and programming of the planned agriculture... More >>
22 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 3:30:00 PM CDT in News
VERSAILLES (AP) — The Missouri state trooper who had a man die while in his custody pleaded guilty Tuesday to... More >>
23 hours ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 2:41:00 PM CDT in News
JEFFERSON CITY (AP) — Missouri senators won't reconvene until at least after the July 4 holiday to consider legislation on... More >>
1 day ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 2:08:26 PM CDT in News
CALLAWAY COUNTY — A manhunt for a suspicious person call ended in an arrest just east of Kingdom City. ... More >>
1 day ago June 27, 2017 Jun 27, 2017 Tuesday, June 27 2017 Tuesday, June 27, 2017 1:22:00 PM CDT in News
Columbia, MO
Broken Clouds 84°
3pm 86°
4pm 87°
5pm 87°
6pm 86°

Select a station to view its upcoming schedule:

Coming Up Next

2:00p
The Dr. Oz Show
3:00p
Dr. Phil
4:00p
Jeopardy!
2:00p
Judge Alex
2:30p
Judge Alex
3:00p
The Robert Irvine Show

Tonight's Schedule

7:00p
Little Big Shots: Forever Young
8:00p
The Carmichael Show
8:30p
The Carmichael Show
9:00p
This Is Us
7:00p
Arrow
8:00p
DC's Legends of Tomorrow
9:00p
KOMU 8 News @ Nine on The CW
9:30p
Seinfeld