Im trying to raise money to help my brothers family get through this really hard time. My nephew, Aiden went into respiratory failure on January 1st, was intubated for a few days, and now is off the vent. The day of being extubated, Aiden experienced a seizure for the first time and is now on assissted breathing (bipap) and feeding tubes. As of right now we are putting in a picc line and waiting to figure out the next plan. With both of Aidens parents being in hospital majority of their time and only 1 of them part time working, money has been really really tight now; From hospital/medical bills, gas money to getting to/from work and food while Aiden is hospitalized, to stuff going on at their home that need to be taken care of. For instance, their mortgage, all their bills (dte, water, car payment, etc.), and their 2 dogs and a cat. This page could be a great platform in which you all are able to not only follow Aidens life living with such a rare disorder but you can also help Aidens devoted parents focus on what really matters right now, Aiden healing. The less they worry about those things the easier it will be to help Aiden stay strong. Aiden is such a warrior and a loving young boy. He's 4 years old with a serious metabolic condition and he's really sick on top of it all. So please, if you want to help, donate, everything and anything helps, and say lots of prayers to help this family in a time of need!
FOLLOW AIDENS STORY ON THE FACEBOOK LINK BELOW. ❤
Updates are being posted to Aidens VLCAD journey on Facebook! If you want more info on what's going on and about his disease please visit the site.
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,
#VLCAD #VLCADawareness #VLCADwarrior #aidenstrong #aidensVLCADjourney #bravestrongwarrior
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