Claudia is a mother of two, caregiver, social media content creator and Duchenne advocate from the Dominican Republic, living in New York. Originally a lawyer by trade, Claudia spent a happy, but demanding, few years raising her family whilst simultaneously juggling work commitments. However, this all came to a sudden halt when Claudia noticed that her son, Rodrigo, wasn’t reaching his physical development milestones. After just over a year of extensive doctors’ appointments, hospital tests and avid internet searches, Rodrigo was finally diagnosed with Duchenne Muscular Dystrophy (DMD). He was just five years old.
After the reality of Rodrigo’s diagnosis and treatment requirements sunk in, Claudia realized that it was becoming impossible to continue her work as a lawyer whilst being a full-time caregiver. Conscious that she was a single parent who needed to make an income to support her family and her son’s treatment, she started a small business selling home-made goods; but just as she was getting into the swing of her newfound business, the COVID-19 pandemic hit, and she was unable to operate. Devastated but determined not to give up, Claudia started exploring “work at home for mum’s” online and found herself instantly drawn to the social media and ecommerce industry. Claudia is now an established content creator, with over 30,000 followers on Instagram, and a successful online blog and YouTube channel. From business tips to healthy meals in a hurry, Claudia has dedicated her career to teaching other mothers in Latin America about how they can make money at home whilst simultaneously caring for a family, particularly for those who are caregivers to children and find themselves unable to juggle traditional jobs.
Following Rodrigo’s diagnosis, Claudia and her family moved to New York, where Rodrigo will face treatment for the next 3-5 years. Despite facing the challenges of being a single-earner in one of the most expensive cities in the world, Claudia has used her business-savvy skills to support her family.
But Claudia could not forget the challenges of getting a diagnosis in the Dominican Republic and vowed to try and help. Diagnosis rates of DMD are still extremely low across South and Central America, and for those who are diagnosed it is often too late to access treatment. In addition, poverty rates are high, resulting in most families not even having access to a wheelchair. Determined to help conquer this, Claudia has set up a not-for profit in the Dominican Republic to provide support for those living with Duchenne or Rare Disease. The digital world has allowed Claudia to spread awareness of Duchenne globally and opened a breadth of resource. “I may not be in a position to help financially, but through my community I know people who can help. And it is my job to raise awareness for those who need it”.
Always looking for ways to make DMD awareness more accessible, Claudia has also published a book titled ‘Adventures of Rodrigo’. Inspired by her son’s diagnosis and experience living with Duchenne. The book is available in both in English and Spanish and will be distributed across Rodrigo’s school to help educate his classmates on his condition. Claudia became inspired to write a book in Spanish when she became aware of the lack of resources and information about DMD across Latin America. She hopes that Adventures of Rodrigo will help bring together other children with the condition.
Claudia’s mental strength and resilience has allowed her to achieve great things and shown what CAN be achieved in the face of adversity. In Claudia’s own words, “Don’t give up, empower yourself. This is our reality, and we can’t change it, but we can keep going”.