James Ford: My MCADD story

Michael's story-ALD

My journey began with a diagnosis, a second chance at life that I was too young to fully grasp. It was a battle for survival—one that I may not remember, but one etched into my parents' memories as vividly as their wedding day.

At three years old, on an ordinary weekday, I had picked up a vomiting bug as kids my age do. With diminishing energy levels and a high temperature, I was acting as you would expect from any child unable to keep their food down. Now, you the reader, possessing knowledge of MCADD that my parents sorely lacked, can see the extreme danger of my situation. However, at this time, I was undiagnosed and the advice my parents received only applied to a normal child. Not one with a hidden life-threatening metabolic condition.

As the day progressed, my mother, possessing the innate ability to overreact and love her children with every ounce of her being, was convinced something was severely wrong. I’d started to become very docile and hallucinate. My mum rang the GP who advised to rush to the emergency room.

On arrival at the hospital, I was checked over by triage and my mum was advised that it was most likely viral. In the process of waiting to be seen by a doctor I fell asleep in the push chair. We were called in to be seen and they were unable to wake me as I had slipped into a coma. Teetering on the brink of death, my mother’s gut decision provided me the time, staff, and resources for the best possibility of my survival. Though far from the happiest beginning, I lived, and my story sheds light on the perils of MCADD in childhood. It also presents an opportunity for me to express my profound gratitude to my parents for their unwavering strength and courage in raising a child with a condition that was virtually unheard of at the time.

MCADD cannot hold you back only you can do that.

Growing up I was a larger kid. I was fed a substantial amount in my parent’s best effort to keep me safe. I ultimately struggled to make friends because of body shame and self-worth issues. The bullying and neglect by children my age led me to be quiet during the early years of secondary school, preferring to watch anime, read books or play video games. There was ample love and support at home but at school It felt like the teachers were my only real friends. I understand that this could potentially be the case for many children with MCADD although they could potentially deal with it in many ways.

Into the latter half of secondary I became more active attending Judo classes twice a week and finding a close set of friends. Due to a combination of puberty and Increased activity I lost a lot of weight very quickly but personally saw myself the same.  I would count calories and avoid eating as much as possible which obviously does not resonate well with MCADD. I suffered with body dysmorphia (not that I saw it that way) and my attitude towards eating caused a lot issues with my parents.

As I continued to get older, I overcame the mental block. Now always conscious to maintain a balanced and mostly healthy diet. Studying hard and achieving academic validation was one of the methods I used to work through these mental issues. Participation in regular sports on and off over the years also helped. I am Currently focused on badminton, gym and running for example.

Personally, I never believed MCADD would hold me back in anyway. I only ever give it a thought when the pains in my stomach cry out you need to eat something. It didn’t stop me from achieving a place at a Russel group university. It didn’t stop me from completing my gold Duke of Edinburgh. And it did not stop me from starting a placement at IBM.

MCADD cannot hold you back only you can do that. However, one piece of advice. I have never been much of a drinker—truth be told, I cannot stand the taste of beer. In most situations, I consume little to no alcohol. However, like any young adult, I have made plenty of mistakes in that area and the aftermath has never felt or been good. As I am getting older my tolerance seems to be dwindling weirdly and the effect of alcohol with regards to MCADD is getting worse.  My personal suggestion would be to avoid it entirely, but if that is not possible, eat a meal before and after drinking, just a tip.

Want to share your story? Please email Toni (our Communities Engagement Officer) via: toni@metabolicsupportuk.org

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