
AidensVLCADjourney
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https://www.facebook.com/aidensVLCADjourney/







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BACKSTORY ON AIDENS VLCAD: (VLCAD affects 1 in 250,000 people, only 5 people in our home state of Michigan have this disorder)
Hi everyone!! So I'm just going to give a little backstory on Aiden.
He is almost 4 years old, his birthday is May 7th. He was diagnosed with VLCAD via his newborn screening, his entire life has revolved around trying to wrap our heads around and understand how to maintain this disorder. We have been hospitalized approximately 30 times because a metabolic crisis can happen so quickly and can be deadly.
When he was first born he needed a special formula called Pregestimil.. it contained MCTs in it [medium fatty acid chains] that are vital fats we need in order to function. Aiden just takes a supplement of the medium fatty acids because his large ones are defected, so, in simple terms, they make up for those defected large fatty acids that give us energy. He was required to eat every 2 hours...no matter what, even if mom or dad just worked a full work shift, even if he was sleeping, even if he wasnt hungry... we had to essentially stimulate a suckle from him (i would pinch his little cheeks and he would usually eat). We did this until about a year and a half old. It was so stressful... knowing that if i overslept by just a little bit, it could cost my childs life? It was difficult to process for me. I kind of put myself on autopilot and did what I had to do. When he was first diagnosed, I panicked. I didn't bother loving or caring for myself in the process of learning how to manage a child with VLCAD. I felt helpless because my son had to endure this, a little 1 year old baby. But Aiden continues to be the bravest person I have ever met and continues to smile and act like he is fine. And I am now I'm to the point where I am ready to reach out and tell our story. I'm ready to speak with parents dealing with similar issues. I want raising awareness for VLCAD to be a purpose of my existence because I know Aiden isnt alone in this experience and I definitely know I'm not alone as a hospital mom. (shouts to all hospital mommas!!)
Much love always,
Aidens mom
Samantha.
#VLCAD #VLCADawareness #VLCADwarrior #aidenstrong #aidensVLCADjourney #bravestrongwarrior
Organizer
Sam Haapala
Organizer
Garden City, MI