Our Teeny Tiny Freckle Friend is with Jesus

It is with a heavy and very sad heart that we announce the passing of our beautiful girl Maryah. Our sweet girl has suffered beyond what a human can go through on this earth. She has spent over a decade suffering from chronic illness and chronic pain; Doctors over the years guessing and nothing they tried worked. She has spent more days than we can even begin to count inside the hospital walls and confined to a hospital bed , fighting and never giving up.

Marayah was finally given a diagnosis at age 25 of MNGIES Mitochondrial Neurogastrointestinal Encephalopathy Syndrome). This disease is incredibly rare, less than 70 reported cases in the world. It’s also eventually fatal by mid-30s as your body just begins to break itself down.

Marayah finally made the move to New York to receive life-saving treatment and organ transplants. There were ongoing complications that occurred weekly and daily, as she still fought with every single ounce of her body. Her mother and father alternated flying up so she always had a loving hand by her side.

Ultimately on November 8th, her body could no longer fight, and now it is time we say goodbye to our hero and lay her to rest.

Maryah, will live in our souls and our hearts while remembering her fight on this earth. We hubmly ask for any donations you can give to assist her parents now with putting her body to rest, and she speads her angel wings and is pain free with Jesus.

When her older brother, Manny our hero, died at age 30 in 2018, these are some of the words Maryah wrote. These words resinate deep in my bones as now we are applying this to her passing:

In Maryah words:

Two things are for sure in this life. (1) We don’t get to choose when we are born and (2) we don’t get to choose when we die. Now my world doesn’t seem to make any sense. It has started to turn in the other direction, knocking me off of my feet and sending my mind into a frenzy; then, all of a sudden, there’s nothing. I’m blinded by darkness, groping the air for some sense of footing and stability, but there’s just nothing..

Although, truthfully, me and God are a bit on tumultuous terms as of the present. But my brother, he never wavered. Not even for a moment did he question his relationship with God. He didn’t always have the answers for everything but when it came to his faith, there was nothing he was more sure of, nothing he was more reliant on, nothing he was more proud of. Many have said and will continue to say that Manny was truly a man of God. I don’t doubt them or the truth in that statement. However, I feel in my soul that the connection he had with God was much deeper than any of us could fathom. It’s true that the bible says that we will never understand all the ways of God and as I sit here in my unimaginable grief and pain, I know that that’s true but I think that Manny understood God more than anyone I have ever known and, I will dare to say, that I ever will know. It was otherworldly, almost angelic.

So maybe the world is a bit darker now because we lost the brightest light my life will ever see. And I won’t be okay for a long long time, if ever. This wound is deep and the pain is beyond comparison. It hurts. It just hurts so much.

So I’m sorry I don’t have some resolved conclusion to all of this. Some may expect some encouraging words of comfort or maybe you’re waiting for me to express my fight to be everything I can be and that I am going to live life to the full but.. I got nothing. Right now, I’m nothing for no one and just for now I’m okay with that.

Thank you kindly,

Megan Molyneux

Manny and Hilda Hernandez