Beyond One Child's Fight: A Father's Mission to Transform Rare Disease Treatment
When Elie Eid's son was diagnosed with Duchenne Muscular Dystrophy (DMD) just before his second birthday, it marked the beginning of not just a personal battle, but a mission that would grow into a global advocacy movement. As the founder of Save Our Sons (SOS), Elie's journey from concerned parent to passionate advocate offers profound insights into the challenges facing rare disease communities and the urgent need for change in how we approach treatment development.
The Diagnosis That Changed Everything
The first signs were subtle - a toddler who didn't walk quite as fast as his peers, who needed support to get up from the floor. But one Saturday evening in 2008, a moment in their backyard would change the Eid family's life forever.
"I remember vividly when he was in the backyard... I went to pick him up, and I kid you not, it felt like dead weight, this one and a half year old," Elie recalls. "I looked at my wife, and I said something's wrong. I don't know what it was, but I said, something's wrong. I have never picked up a baby that felt like that."
The Impact on Family Life
The diagnosis of Duchenne muscular dystrophy didn't just affect their son - it transformed their entire family dynamic. Elie provides a poignant perspective on how such diagnoses ripple through families:
"What people don't also realize is this ripple effect within the family, because the focus is on the child or the young man or the boy... Unconsciously, because you're so focusing on one child that the other child or children start to feel a little neglected... It's bigger than just Duchenne. It's bigger than just having a diagnosis, because that diagnosis will change your life, will change your child's life."
From Personal Mission to Global Movement
Founded in 2008, Save Our Sons began as one father's attempt to fight for his son's future. It has since evolved into a comprehensive organization that:
Raises awareness about Duchenne muscular dystrophy
Funds critical research initiatives
Provides support for affected families
Advocates for policy changes
Helps fund equipment and nursing support for children
The Challenge of Treatment Development
After 15 years of advocacy work, Elie identifies three key hurdles in advancing treatment for rare diseases:
System regulations and red tape
Hospital priorities and balance sheets
Pharmaceutical companies' need for return on investment
"We're making a difference," Elie acknowledges, "but I still feel that there hasn't been real change... The three key elements where change is gonna come: it's our hospitals, it's our pharmaceutical companies, and it's our politicians. And when they can communicate and make it a smoother path for all of us... then change gonna come."
A New Perspective on Life
Despite the challenges, Elie has found profound meaning in his journey: "I believe my son's my biggest blessing... He's changed me as a human being. He's made me be a better person. But more importantly, he showed me the world from a different light."
His message to others reflects this transformed perspective: "Enjoy your health, and you will. But never forget to appreciate what you have. We take a lot for granted."
Looking Forward
The work continues, with SOS pushing for:
Unified advocacy voices in the rare disease community
Streamlined processes for treatment development
Greater collaboration between stakeholders
Increased funding for rare disease research
Better support systems for affected families
For Elie and countless other parents, the race against time continues. But through organizations like Save Our Sons, they're ensuring that no family has to face these challenges alone.
