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My name is Guissela, and I'm the mother of a miraculous little boy. As a mother of 2 boys with very different disabilities, there is nothing more terrible than seeing your child in pain over and over again. Well for me it was my 14-year-old son name Marccelo. After 2 spinal cord surgeries, we thought we missed the bullet when we were granted a miracle after a surgery that helped him get stronger and able to finally take his first steps with a gate trainer. But just like that our happy little hero's progress stopped. When Marccelo started 8th grade, he suddenly began to get weaker and weaker and lost the ability to control his neck and lower extremities. He also lost his spirited smile.
I can still hear him asking me, "Mommy what's going on? Why can’t I move my hands?" I wish I could have given him a positive answer so he could have felt better knowing there was something we could do about it. Unfortunately, we got the sad news that he would need yet another spinal surgery; only this time it would have to be a spinal fusion and his life would be in jeopardy. Marccelo could lose the little strength he has left and be put on a ventilator for life. I am still praying for the courage to take that risk.
Marccelo was born on November 22, 2004, the week of Thanksgiving. I was thankful to God for giving me such a beautiful blessing. I was beyond happy and felt I was the luckiest mother alive. On the day of his routine 9-month checkup, the doctor gave me the first of many bad news to come. Marccelo needed to be seen by a specialist due to the fact that he was very floppy. I took Marccelo for an MRI where I was told that he needed a spinal decompression. At only 13 months Marccelo had his first spinal surgery. Doctors told me he would never walk, speak, eat and that he would live his life permanently in a wheelchair. At that moment my world collapsed. I couldn't understand why this was happening to me. My faith was tested and I was angry at God for what he was doing to my child. It was the saddest day of my life.
I gained strength and decided to give my son the best life I could . I was on a mission to prove the doctors wrong. So as Marccelo grew up, I never treated him differently, nor did I make things easy for him. I wanted him to give it his all so he could become independent and succeed in life. At the age of 3, he was able to sit up, use his little hands to sign, speak with difficulties, eat on his own and do many things regular kids his age were doing. Of course, the walking part was a bit difficult. Regardless, Marccelo learned 2 languages, his letters, colors and numbers before he went to kindergarten. I was so proud, and happy for him. I knew there was something special about Marccelo that went beyond the fact he was my son. He always had an incredible way to touch hearts and inspire love. He is compassionate toward those suffering and has always been a peace maker. This is why I believed him when he told me he had an encounter with God.
In 2017, just before Marccelo’s second spinal decompression, he shared his story about a guardian angel coming to him. He described his guardian angel and a message God shared with him about helping other children get to heaven. He told me he met my grandmother who passed away 28 years before, telling me she had a message for me. She called me by my pet name and said things about me and our relationship that Marccelo was not aware of. I get goose bumps whenever I share his story. After the experience, Marccelo went into his surgery full of faith and optimism with an unprecedented recovery in spite of what the doctors had told me to expect. That was why we thought we dodged a bullet.
Marccelo has always been a kid who enjoys every second of the day, is outgoing, and still believes in his dream of becoming a famous video game player or cop! Making sure everyone is happy, he consistently finds the best in the worst. He is so loving and supportive to his older brother who has autism...and to me, encouraging me when I would sometimes be brought to tears when my body would give out while trying to lift his chair into the car. My body, never my will, because I know I need to continue to be strong for him and his brother. There are no limits to what I would do to see my son smile again. The pain of watching him go through this is insurmountable. I would take it all myself if it would lessen it for him.
Today we face a bigger challenge. I am trying to ready myself and Marccelo for his third spinal cord decompression and fusion surgery. I am praying he will not have to be on a ventilator for the rest of his life, but I have to be prepared in case the doctors are right. I admit, it is overwhelming. Not just because money is a big issue but because time is running out and a lot of changes have to be made to make it all happen before his surgery. Following is a list of what we desperately need. Fortunately, I was able to take a few things off the list because insurance is covering them. Insurance is not covering the following:
- A wheelchair with a head array so Marccelo can move around independently, having the autonomy to continue to learn and have some fun playing games.
- An accessible mobility van because as he gets older, he is getting heavier. I can’t carry him anymore because it is not safe.
- We need a one level home with a room big enough for his medical bed, lift, and any other equipment he might need after surgery, also with an accessible bathroom so he can move around.
Marccelo is not the only kid in need; we are not the only family in need. I'm only a very tiny percentage who are blessed to have come across a tremendous network of people who are encouraging me to take this step of reaching out to others for help. We a beyond grateful for anything you can give to help us get through this.
A forever thankful mom, Guissela
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