Lucas John Foundation INC
645 S Esquire Way
Mesa, AZ 85202

April 1, 2022

Office of the Arizona Governor
Governor Doug Ducey
1700 W. Washington Street, Suite 250
Phoenix, AZ 85007

 

Dear Governor Ducey,

I am writing you today to tell you about my son, Lucas. Lucas was born in Gilbert on March 3, 2018, after an unremarkable pregnancy. His father and I were so excited and overly prepared for his arrival, so we thought. Twenty-four hours after being born, it was clear to our nursing staff and us that something was just not right with him. After two hospital transfers, several tests, and evaluations, Lucas was diagnosed with a rare genetic condition known as Non-Ketotic Hyperglycinemia or NKH. The PCH Genetics team informed us that our newborn would likely not live to see the outside of a hospital, and if he did, his life would be one not worth saving. We chose to fight for Lucas, and by the grace of God, he left the NICU at Phoenix Children’s Hospital after just 21 days.

For the past four years, our family has been advocating for NKH patients like our son and raising funds for the University of Notre Dame and Colorado University, which are working on NKH gene therapy and drug treatment, respectively.

Each year NKH families host NKH Awareness Day on May 2. The few families affected by this rare genetic condition share their stories with the public in hopes of spreading the word about NKH.

Today, I request that you, as Governor of Arizona, kindly declare May 2 as NKH Awareness Day for the entire state. In doing so, we will be able to spread awareness and further raise funds to support the research necessary for giving people diagnosed with NKH a better quality of life.

 

Thank you for your time and service,

Chancee Culp