In 2004, I was told by my biological mother that my son would have a 50/50 chance of being diagnosed with Adrenoleukodystrophy. I asked the doctors to test me, but they wanted to wait because I was considered high risk. My son was born November 15th, 2004.
A short time later, the physicians confirmed he was born with ALD, but they did not know how it would affect him as he got older. We watched him grow, with a few struggles along the way, not knowing whether his behaviors and characteristics were caused from ALD or if it was a result of him just being ill or a child. Overall, he did fine. At the age of 18 months, we joined a medical study in Baltimore, MD which ended seven years later. We are not sure where the results of the study are going next. In December of 2011, I had a second son, and once again, he has ALD.
I had no clue how ALD would affect me or my family. Over the years, this disorder has changed us so much: our outlook on life, our eating habits, our family values and my health have all been greatly affected. I have found that there is not much that can be done for females affected and not many are recognized, as it is predominantly a male inherited disease. I am coming into my eighth year of knowing about ALD and its effects on kids and families, but everything I hear is all clinical opinion and less family input.
My dad died before I was 15, and my mother was out of my life from 12 to 21. It wasn’t until I was five months pregnant she decided to tell me that we had this deadly genetic condition, which could affect us in ways we were not ready for. I have managed, but everyday I live and watch my kids go on, knowing that they are more like me. It would be nice to meet them, talk to them, let my kids see they are not alone in this struggle. ALD has affected my ability to work, so for many years I have had to be on welfare. In the last five or more years, I have fought for disability, but I feel like I am fighting a never-ending battle that I just can not win.
I am sick of fighting to pay bills, fighting to meet our needs; and, even more, of living my life to meet appointments that more often than not, limit my time with my kids and being able to watch them play and grow. I am living everyday to schedule another appointment, find a way to pay another bill, to afford rent and medication and make sure all the food I buy lasts all month.
I wish there was help for people waiting for their disability to afford built up bills, to help buy clothes and shoes one needs, to afford a little more food and maybe a special night out as a family without thinking, “What bill do I need to skip on just to have a night at the movies?” or “How will I pay for a camping trip and rent at the same time?”
When do we get to stop feeling like we are trapped in this world of sickness and never-ending struggle of hurt? When can we live the All-American Dream of good health and freedom? I feel like I am trapped and fighting for a life that only brings more hurt; I do not think it is fair for my kids to one day have to realize that we live in a struggling world. Right now, I can hide these realities from my children the best I can, but if we do not find help for some of our day-to-day struggles, it will someday be obvious that there is no help for our struggles and it is all going to continue.
I want to watch my kids play, not sit home and hurt. I want my children to know there is hope for our struggles.