About Us

Let me introduce myself, Darlene Shelton, the driving force to this campaign but also the grandmother to a wonderful little boy, DANNY, who is the heart behind our desire to prevent morbidity and mortality for the population of people with rare disease, chronic illness and special medical needs who require specialized treatment and/or receiving their patient carried specialty meds in emergencies.

In our case, it means replacement clotting factor.  The Shelton Family journey with Hemophilia started in 2011 when our precious boy, DANNY, had his first “bleed” at 10 months old.  After a week of ER visits and testing, the diagnosis of “severe” was determined and our lives changed forever.

With no previous family history, we dove into researching medications, treatments, and answers for a safe way of life for our little man and soon felt as secure as possible that we had medication, plans and procedures to protect him as much as possible for a long, happy, basically normal life.

But, in April of 2014, one of those safety plans was torn apart!   We were informed that although we had Medic Alert on his headrest and car-seat with his Factor pack attached to it with medical orders & dosing, the Paramedics or E.R. Doctors were not allowed to give it due to conflicting protocols and liability fears.

We were completely shocked and doubted the accuracy.  However, with research, we sadly realized it is true which started the spark of discontent.  After a Ladies’ Retreat in June hearing the actual horror stories from those experiencing this and even one family’s loss of a father/husband, we knew we had to TAKE ACTION and not just in Missouri but across the entire United States.

We started “at home”, at the top, with our MO government, with nothing but dead ends.   At a loss, I tried a few different national avenues to no avail.   God had clearly placed this desire on my heart and soon a friend, Tila Hubrecht, was elected as our State Representative, one message to her opened the door and she started working.

Fast forward to March 2, 2015, with our local News-KFVS12 airing the story followed by Lobby Day on the 11th and the story went nation wide!   We have been able to contact many groups, individuals, law makers, and state agencies.   We now have people informed and beginning to work toward a solution on the state and national levels!  We now have legislation passed in Missouri and Minnesota with nationwide goals.  We are also in contact with HRSA, AAP and several national EMS associations.

With that said, we are one family and we still need caring people from every state to join with us.   We need your Senators and Representatives to help work with the State EMS regulators to make the needed changes and give legislative support.   As we voice our concerns and the facts of the gap in protection, a change to State Protocols to protect those affected, your family, your friends, coworkers or neighbors will happen.


{View an early video of DANNY receiving Factor by his Home-Health nurse, Josh}

3 thoughts on “About Us”

  1. My son Niko has adrenal insufficiency and we have similar issues in Utah where we live. We need to get this changed for everyone with rare diseases.

  2. I am very happy to see your fight going nationwide. May God help this problem be fixed and help Danny. I will share from fb and pray for all.

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