I was born in 2002. At one week old, I was diagnosed with LCHAD FAOD. Unlike most people, my body cannot break down long-chain fats in food and turn them into energy. I was on a formula for energy. If I would get sick – basically any minor illness put me in the hospital. Needless to say, my childhood was challenging. It is not easy for kids to describe how they feel. A child may tell a mom that her leg hurts and then she needs to figure out what descriptor words to use. For me, I would describe this as achy muscles – it’s like a deep tissue soreness that doesn’t go away.
Now, when I try to explain my illness to someone – at times it’s going to be an invisible illness – you’re not going to know I have LCHAD because I’m feeling fantastic, I have energy, and I walk around like a crazy person. I’m acting normal. And then there will be some days when I’m in a wheelchair or I’m tired, or I’m not able to engage as well in conversation or even think clearly on a day that I don’t have a lot of energy.
I also have a scooter and AFO¹ leg braces and it’s helping me get through life but I’m living in chronic pain and have had decreasing function the past few years. I couldn’t do much on my own. I was able to get into a clinical trial and that was a defining moment. If people around me can be supportive and understanding that some days are good, some days are bad, and that’s how it’s going to go – the disease is unpredictable – it’s no one’s fault.
LCHAD has thrown me a lot of challenges over the years and I’ve tried to make it part of me but it does not define me. I have been learning to advocate for myself and better explain what is going on with me because I need to be the one – I know my body best.
I’ve also been able to continue everyday life, like playing in the band. I live for band! And I’m slowly but surely learning how to drive. I try to live my life and have a good quality of life.
For the past 18 years, I have felt what it is like living with LCHAD, but my mom has seen everything. She has been my advocate but is passing the torch on to me.
I’m ready to launch into a new life – one that is mine and independent. Complementary advocacy will continue as my mom passes the torch to me – she will still be there for support as part of my journey.
During a recent conference, I helped a mom whose son is coming into middle school as they try to figure out how their son is going to advocate for himself. I believe that parents and family should continue to stay involved through ‘complementary advocacy.’
My journey continues; I’m in a boot camp for independence skills and, going down the list, every day it’s a little shorter on the things I have to figure out how to do myself. I’m so pumped. I’m ready to launch into the next phase of my life.
As a panelist at a recent virtual conference, I was asked about living with FAOD and the transition to college and recommendations, what to look for, and what’s ahead.
For me, college is the next step…college is my dream. I want to be on campus – that’s a big goal for me. I chose Texas Tech University, which is well-known for its disability program – I wanted to be sure that the campus can accommodate me at any point in my physical ability – if I need a wheelchair or a walker. Hopefully, one day I won’t need any equipment, but for now, I will be prepared as I look forward to this fun new chapter in my life.
AFOs¹: Ankle-Foot Orthosis