Marios story

Marios bio mom was homeless and a diabetic. Being homeless she didn’t have anywhere to refrigerate her insulin. By not taking insulin is what caused Marios spinal syndrome. It’s called caudal regression. In his case it effected vertebraes T9 and below. Meaning all the vertebrae below T8 are missing or misshapen and not connected.  The further down his spine goes the worse the effect. His spine is not attached to his pelvis. His right hip is dislocated. Was that way in utero. Making one leg shorter and more effected than the other. It doesn’t only effect his spine. It effects everything from his breast bone and below. Heart defeat, short lungs, missing bottom rib pair, one kidney, neurological bladder and an irregular intestinal pathway.  This is considered a rare syndrome. Due to the fact that all it takes to prevent this is for the bio Mom to take her insulin. 
He also has another rare syndrome. They aren’t sure why this one occurs. So it was of no fault of the bio Mom. It’s called Golden Har Syndrome. It effects everything from the breast bone and above. In him it has caused a heart defeat requiring open heart surgery to repair at 2 months old. It also cause him to have a short and webbed neck which limits his mobility. He couldn’t turn his head until he was over a year old. He has a low set jaw which seriously restricted his ability to eat as a baby. He needed to have a feeding tube placed in his stomach and was tube feed. He was able to get his G tube removed when he was 6 years old! Since then can eat fully by mouth. It left his was some facial paralysis that continues down his throat. Which also causes speech difficulties. His right side was effected. The right side of his face is a little flat and doesn’t have the same muscle strength. He’s missing his right ear and inner ear structures and is deaf on that side. His left ear is also malformed with a moderate hearing impairment. His eye sight was effected in both eyes. According to the MRI he has no significant blood supply to the back of his eyes. They think his eyes get their blood supply from the surrounding capillaries. He has poor sight but due to the ear situation glasses are a hard fit. He chooses not to wear them since it requires a head strap to keep them on. But he can see surprisingly well. They shape of his head is also effected causing it to have shaped his brain differently. His brain is not typical. His gray and white matter is thick. This makes it harder for signals to get where they need to go. 
When he was 5 months old he got RSV pneumonia that landed him oxygen dependent for the next 2 years. Also left his small lungs with even more lung damage which lead to asthma. 
Lastly he was born 8 weeks early.  The bio mom had no prenatal care. He was born in the back of an ambulance. Which actually ended up saved his life. He was born dead. Since the paramedic delivered him, they revived him. Once the stabilized him they went into the ER where that doctor asked why they revived him! If he had delivered him, he would not have. However, being born dead with no oxygen for not sure how long. It left him with brain damage causing moderate developmental delays with a low IQ. He isn’t able to read or write much. Academically he functions about a kinder level. Socially he is the 20 years he is. 
He’s been played sled hockey, gymnastics, trampolining, swimming, surfing and baseball. He can skate broad. Loves roller coasters, amusement parks and loves to dance! And of course loves to watch various YouTube videos like every other teen. He was blessed to be able to spend an afternoon with Tim Tebow st Disneyland as a part of the Tebow foundations W15H program. That was amazing! 
Mario is all about making friends. Everyone is his best friend. And he means it. This is why it is so hard for him to understand bully’s. He gets stares, teased and name calling way to much. Hence his delevoping his Stand With Mario campaign. He came out one day in October of 2017 saying he wanted to stop bullying. He decided to start selling merchandise to fund Buddy Benches at elementary schools. This is a spot where kids can make friends. He’s hoping by helping to make friends the bullies can be a friend to someone and be included. 
We were foster parents for medically fragile kiddos. We got the call one day for Mario. The social worker said he looks very scary on paperwork but pleaded with me to go see him before making up my mind. I did and the rest is history. Of course we took him him when he was 4 months old. We were able to permanently adopt him when he was 5 years old. They orginially sent him home assuming he was going to die in the next 2-6 months. Once he reached 6 months they thought he’d die before his first birthday. That came and went. Next was maybe he’d reach his second birthday. Now that came and he was finally shows signs of things getting better. It was all up after that. By 3 he had figured out how to get around and was such a funny little character. Always happy and finally starting to talk! His very first word was as he was watching Dora the explorer. Backpack! Clear as a bell. Backpack! Such a crazy kid! Up until then he had learned just over 300 signing words! He always wanted to communicate. Once he started talking there was no stopping him. He’s so social and just loves everyone. He can always figure out a way to do what he wants. There’s really no stoping him. Even times when I tell him, how are you going to climb that rock wall? No stopping him if he wants to try it. Up that wall he went! Now, he didn’t want to do it again. But he knew he could. I have learned to stop saying how and just let him try if that’s what he wants.
So many doctors want to “fix” him. Multiple surgeries to have his legs hang straight in the wheel chair. Give him a new ear, fix the ear he has. Put rods in his spine for support. Over and over he says no.  “I like the way God made me”. “I want to stay the way God made me”.  We like the way God made him too. He’s perfect as he is. The world needs to see him that way too. He has so much to offer. So many great ideas to help change the way people think and see others. He really wants us all just to be friends. His motto is, #NoBulliesAllowed #bekindtoeveryone #friendshipallaround. How great would this be? I guess that’s my boy in a nut shell. We have been so blessed that God placed him in our lives. I can not imagine how our lives would be if we didn’t bring him home that day from the hospital. 

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