by Anonymous
about the author:
As an international family visiting this country, we must remain anonymous to keep opportunities open both for ourselves and for other families like us. We are sharing our family’s story to help the children and families affected by Duchenne Muscular Dystrophy. We want to help break the barriers that hinder treatment for all children with Duchenne.
Breaking International Barriers
We are a family of Hispanic origin, visiting this country and facing extraordinary circumstances.
As an international family visiting this country, though, we must remain anonymous to keep opportunities open both for ourselves and for other families like us. Even so, we want to be a voice of advocacy and conscience for our Duchenne community and we will share as much of our story as we can. Unfortunately, our story is the story of many international Duchenne families.
We Left Everything Behind…
Our youngest son was diagnosed with Duchenne Muscular Dystrophy at the age of three.
It was devastating news for my whole family because of what this disease means. It was even worse when we realized that there are no professionals knowledgeable about DMD in the country we come from. There’s no access to clinics, treatments, or government or social support. Nothing.
This situation made us decide to leave everything behind – our country, our family, our home, our work, profession, and friendships, among many other things – to focus on the quality of life and the opportunities that our son deserves.
Our Challenges
It is not easy to be an international family when one seeks a change of life, care and medical opportunities that could in some way improve our son’s quality of life. Due to our lack of immigration status, we find ourselves very limited in finding economic and family stability, even in finding a home for us.
But, our little boy has a unique opportunity to receive better treatments and medical care. So, we are doing whatever it takes.
We arrived here without knowing or having anyone, neither family nor friends. And our family is going through drastic changes, from the psychological to the economic.
The difference in currency with our country is very wide and the few savings with which we arrived are now gone. For a long time, we looked for help, from the consulate and the embassy of my country to compatriots of our country. All the doors we knocked on offered good intentions, but nothing concrete that could help our family.
We generate income as we can. Covid visited my family, so we spent a long time without generating income and we had to cover medical costs for the whole family. The little we earn is not enough to cover our expenses, from paying rent, utilities, telephone, food, and private health insurance for the whole family. This doesn’t even count the innumerable necessary expenses that often just appear. Somehow, we have to find a way to cover them.
We have changed homes three times in less than a year. The few things we did have, we had to leave or give away due to the lack of transportation and money. Even so, each change of housing was a new beginning, hoping to find new hope to start a better life.
We still need beds and furniture for the apartment where we live now. We need other things, too. Our expenses exceed our income and we need financial support to find an economic balance and a better plan for our new life.
Despite all this, there is something that keeps our family united and strong. God never abandoned us and our faith remains intact. We are sure that we will succeed and all this sacrifice will have its reward.
Looking for Stability
We live in a difficult situation, as do many international families. There are many limitations and conditions imposed upon us that prevent our family from thriving.
For that reason, we need to look for options to find emotional and economic stability while we find strategies that allow us to improve our lives in this country. All ideas, help and financial assistance will be welcomed and appreciated.
God bless you.
I have often imagined if my son had been born in another place how different his opportunities for care would have been. I appreciate you sharing and pray for your son and your family.