From #superAiden's mom:
At 27 weeks Aiden and his twin Evan were born premature. Preemies already face a hard road but the road Aiden faced was one he was given a less than 1% chance at surviving.
At 19 days old, already moving mountains as a preemie, Aiden came down with a devastating infection called NEC. Necrotizing Entrocolitis is where the tissue of the intestines die very quickly and in turn cause an array of life threatening complications very rapidly.
Aiden faced every complication possible. He went into organ failure, DIC (which is referred to as death is coming), sepsis, etc. We were told to say goodbye and his life would be one of he survived of a “vegetable”. We bowed down by his bedside and instead of saying goodbye begged for him and God to let him stay in any condition. That we would take “vegetable” Aiden, we would take any complication, any diagnosis as long as it meant we had our Aiden.
Aiden delivered that promise after a very lengthy battle and many surgeries. He beat insurmountable odds, but not unscathed.
Aiden suffered many complications from that battle he faced as a baby. He has epilepsy, cerebral palsy, short gut, CVI, auditory neuropathy, among many other diagnosis. BUT he is so very much Aiden, a funny, spunky, vibrant almost 5 year old little boy. His is just trapped in a body that doesn’t agree with that.
His CP along with his severe form of epilepsy leave him unable to control his body and he relies on a wheelchair to get around, sit up and be at the same level as his brothers to keep up with their shenanagins. He cannot sit, stand, walk, roll over, he relies on his wheelchair for everything aside from laying down.
Aiden JUST got his wheelchair this summer, it was a long road to get his wheelchair approved and almost year long battle.
He adores his wheelchair but it does not fit in our car, the van we had was all but ruined driving to the NICU to visit the twins 3-5 times a day for 5 months.
We are working to raise money to purchase a van that we can adapt to be accessible for Aiden’s wheelchair.
Not only would it enable Aiden to get out and see the world, which we cannot do at the moment without carrying him since he does not fit in a stroller any longer.
But his wheelchair was made specifically for his body, every cushion and strap and it can be used safely as a carseat in a van. He currently is very uncomfortable and in pain if traveling in a car.. Some body positions trigger seizures in Aiden, one of them is the position he is in when in his carseat. With him rear facing he has severe body spasms and seizures that cause his legs to get locked and stuck which is painful and scary for him. The seat is very uncomfortable for him because it is designed for a baby, not a 5 year old boy with no body control.
Having a van that we could transport Aiden in would change his world. It would give him a world bigger than around our block to the park and laps in the driveway pretending to be a racecar. It would mean comfort and joy!
Aiden has been through so much and gives so much and is so pure and joyful to not be able to provide him this has been heartbreaking for us. But having a special needs child comes with many other expenses and vans that will last and can be adapted to fit his wheelchair are just out of our families reach for sometime without help.
To be able to do this would change his life, it would give him something when so much has been taken away.
With all of the battles he faces daily one of them that we can hopefully ease is transportation. Something we took for granted before Aiden. It is amazing how something so small can mean so much when it becomes a hurdle.
Even with all that Aiden has faced he is still the most joyful and caring spirit and has the MOST contagious smile.
Aiden has changed our lives in so many ways, he has shown us the power of love and all that it can do. To be able to improve his life so dramatically and get him out into the world safely and comfortably would be the biggest blessing, and to know it was made possible through love means even more.
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