Voices Across America

Duchenne: We Moved to America for Options

Maria

State: North Carolina
Congressional District: NC09

Diseases

Bone / Muscle Disease, Genetic Disease, Neurological Disease, Rare Disease

Issues and Challenges

Maria has encountered: Rare / Underserved Disease, Disability, Geography, Underserved Community

My Story

Emigration: a consequence of rare diseases

Emigration can be a consequence of rare diseases, especially when the treatment for the disease is not available in the patient’s home country. According to a study by Share4Rare, families affected by rare diseases often choose to emigrate to countries where they can access adequate therapies.

Personally, this is no news for us, being one of those families that left everything behind when a rare disease diagnosis hit our lives.

Hi! I’m Maria Decavi, mother of 4 incredible kids, wife, journalist, and a family mediator, or… kind of used to be, because here in the United States I have worked as a Substitute Teacher and Patient engagement in a nonprofit for the past year. I mean. It’s hard to start all over building a career when you are already in your 40s with different priorities than 20 years ago.

Our story started in Argentina when my youngest son Jose was almost 2 years old. We noticed that he didn’t meet the motor guidelines of a child his age. This led us to countless medical specialists appointments until in 2016, he was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is caused by a genetic mutation in the dystrophy gene that causes progressive muscle weakness affecting all skeletal muscles in the body including the heart and lungs, meaning that boys are wheelchair-bound between 9 and 12 years of age and life expectancy is around 30. It's a disease with no cure that takes away all autonomy of movement by their teens. As you can imagine, the news was devastating.

No cure… no cure… I remember those words as the hardest but understanding at the same time that cure is not a synonym for treatment, nor is treatment a synonym for clinical trial. There was so much to explore.

I knew it before I started searching: no clinical trials in Argentina or South America were available for my son or other kids diagnosed with DMD. That was one of the reasons my husband and I decided to fund a nonprofit for families with all neuromuscular diseases. In between helping over 60 patients in the FUSAENM (Fundación Saltena de enfermedades neuromusculares) we traveled every six months back and forward to Nationwide Children's Hospital in Ohio, EEUU in the hope of getting our son screened for a gene therapy clinical trial.

The fact that we were not living in the United States at that time made us fail in our purpose. It became very clear that we needed to move. And we did. My husband got work transferred and, with only 5 suitcases of personal belongings and our hearts filled with hope, the 6 of us moved to North Carolina in July 2022. Ever since we have been struggling with Duchenne, a new language, a different healthcare system, the burden of missing our family and friends, and the anxiety of not being able to get him to receive the drug, yet.

Duchenne's journey is a roller coaster, and one with big ups and downs, but yet is our journey. I’m committed to helping with my DMD Hispanic community, an underserved population in most cases because of the lack of legal status.

I truly believe that someday clinical trials are going to be available for our sons in their own countries as a result of humanitarian solidarity in the medical/Pharma/political field. That day is not far away, I feel it deep inside. One day we are going to say: TENEMOS UNA CURA PARA DUCHENNE! (We have a cure for Duchenne).

My Motivation and Inspiration

My hero, my son José.

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