This is our son, Braxton (Brax). To look at our sweet 5 year old boy, he looks no different than other boys his age. 

Fortunately, Brax is still able to do many activities that he loves and that give him an opportunity to be involved with friends and family, such as: playing with his hot wheel cars and monster trucks; going to the park; riding his scooter; having sleepovers with his cousins; playing with his little sister Adi; getting from one room to another on his own accord and traveling to visit family in Australia. However, as his parents we are left every day wondering how much longer Brax will be able to continue to do his favorite things.

In September 2022, our world was shattered when Brax, was diagnosed with Duchenne Muscular Dystrophy (DMD) - the most aggressive form of Muscular Dystrophy.

This rare disease has turned our lives upside down and left us in a constant state of worry and fear for our little boy's future. 

On June 22, 2023 we were given a glimmer of hope when the drug, Elevidys was approved by the FDA to treat children ages 4 and 5 year olds (our son being 5 with a birthdate of July 26th, 2018). 

Thinking the biggest hurdle was the medical screening Brax had to pass to be eligible to receive the therapy. We were overwhelmed with happiness when he passed. 

But how wrong we were;

Since August 2023, we have been battling Blue Cross Blue Shield of Arizona (BCBSAZ) for approval of this life-changing treatment. 

After receiving the initial denial from BCBSAZ, we started the appeal process. We escalated to the level-2 appeal stage, where on November 27th, 2023, BCBSAZ approved the treatment. Overflowing with joy and a happiness we hadn't felt since before Brax's diagnoses. We told all of our family and friends, who were all extremely excited for Brax, and our family.

With the BCBSAZ approval, we anxiously went through the medical screening again to confirm Brax is still eligible for Elevidys - he is. We received an infusion date for January 22nd, 2024.

With this news, we made the decision to stop taking Brax and his sister, Adi to all of their favorite things; preschool, swimming lessons, Adi's gymnastics class, to the playground, seeing friends and family so that we could protect Brax from getting sick, which could potentially affect the infusion date. 

Our joy came to a crashing halt a couple of days after Christmas. We, along with Brax's health care team were blindsided when we received a letter from BCBSAZ stating they had completed a re-review appeal and had rescinded the approval.

We are pleading with BCBSAZ to reconsider their decision and approve this life-giving treatment which will change the trajectory of his life. We believe every child deserves a fighting chance against such devastating diseases.

How could an insurance company do this to a 5 year old boy? Our son and family had been given so much hope for our future and then BCBSAZ stripped that right back from us. 

To add to the completely unethical treatment we have received from BCBSAZ, we know of patients with BCBS in other states across the country, who have been approved and already received the Elevidys infusion.

This is not just about our family's fight against an insurance company; it is about the right to access approved medical treatments that can significantly improve quality of life and longevity.

Please sign this petition to urge BlueCross BlueShield of Arizona to provide coverage for this crucial treatment option, so that children like Brax can have hope for a brighter future.