This is a story of a boy that has been fighting almost his entire life, every day is a battle for him but he never gives up. Please read his story so you can understand what he has been through and help us spread the word so we can help him achieve his goals and make him feel more like a typical six year old.

So here we go… grab some tissues just in case.
 
Pedrito was born in Guatemala in 2016, he was a healthy baby. He reached all his milestones on time.  At one year old he was almost walking by himself, and he could say a few words like mom and dad.
Everything was great, until at 1 year old he started to vomit. He was admitted at the hospital for dehydration but something was still wrong. When they took an x-ray of his abdomen they noticed that his heart was huge. He was immediately transferred to the ICU because he had dilated cardiomyopathy.
He was so sick that he had to be transferred in an air ambulance to Texas Children's Hospital in Houston, since his only option was a heart  transplant.  
In March 2017, he had his first open heart  surgery. He had to be connected to a Ventricular Assist Device called the Berlin Heart. The Berlin Heart is a pump that works as an artificial heart, providing the blood flow needed to the whole body and organs, and taking away all the work from the damaged heart.

He only had it for 2 weeks, because his heart recovered a little bit and decided to fight back the machine. Unfortunately, when he was in it, he had two strokes.
Miraculously he recovered from the strokes and he kept fighting and playing.
Unfortunately, even though Pedrito´s heart condition was getting better, one week after being removed from the Berlin Heart he was submitted to various open heart surgeries because the doctors found a large infection in the chest wound. This infection passed through the sternum and infected the membrane surrounding the heart.

After 17 days with his chest open, the doctors were able to get rid of the bacteria. Because the infection reached the sternum they had to remove almost all of it, and to be able to close the chest they had to lift his pectoral muscles and overlap them to give support and protection to the chest. Pedrito then had to spend two weeks without being able to move his arms to allow the surgery to heal completely.
Pedrito had 2 good weeks, where he played, he received therapy to get stronger, he received a lot of family visits, and was able to step down the ICU.
Until his heart failed again, this time there was nothing to do, except wait for a heart transplant. Pedrito was intubated, and most of the time he had to be sedated and paralyzed to help his body rest.
Finally, in August 2017, we got the call. Pedrito had a match. We cannot explain the horrible feeling of knowing someone else lost their kid, but we were so grateful because they made the unselfish choice of giving the gift of life.

Pedrito was the last kid to receive a transplant because it was  the day that Harvey (the hurricane) hit and it was a disaster.

The surgery went great, there were no complications as the doctors were expecting.
 Sadly, everything went wrong when he was already in the ICU room. He went into cardiac arrest, the doctors did CPR for only 2 minutes.
 The same night he was put on ECMO for 3 days to give the new heart a rest.
The last open heart surgery he had was when the doctors took him off the ECMO, closed him, and woke him up. Nobody knew he had injured his brain, but when he woke up, we knew immediately that something was wrong. Pedrito wasn’t himself,  he had a lost look, he couldn’t move, he couldn’t make sounds. We asked Neurology to take a look at him because definitely something was wrong, even though the doctors thought it was all the sedatives he had. Two weeks later we got back the results… and yes, his brain was swollen and they just couldn’t tell us how big the damage was, " time will tell" that’s all they said.
(I'm still in shock that it only took 2 min to change his whole life)
Pedrito started therapy immediately, he was inpatient for 10 months in total, and one month was in the rehabilitation area. Because he couldn’t swallow anymore, in September 2017 he got a g-j tube placed to be able to receive all his nutrition and medicine that way.
In December 2017 he had his first seizure (since then the doctors haven't been able to control them). He has tried several medicines (but because of the transplant he is limited), he was for almost 2 years in the ketogenic diet, and in September 2020 he got a VNS implant ( Vagus Nerve Stimulation).

Thank God seizures have gone down, from 50 a day he used to have, to around 10. He is impressive, because seizures make him really tired, but he keeps fighting and trying harder every single day.
On January 2018 he was diagnosed with Quadriplegic Cerebral Palsy, this means (in my own words), his brain is having problems communicating with his muscles, therefore he can't hold his head, he can't sit, he can't crawl, he can't walk, he can't talk, he can't swallow properly.
Thanks to therapy, he has  been able to get better. For example, before he was practically blind, he has a condition called CVI (Cortical Vision Impairment). His eyes are healthy but the connection between the brain and eyes is bad. So before he couldn’t see anything, not even tracking light. Nowadays he can see a lot more, up to a certain distance, but he can track objects without sound and light.
He is also able to roll from side to side, from stomach to back, and back to stomach. He can use both of his hands to reach objects (more with the left), he can hold a light object with the left hand for a few seconds, he can hold his head a lot better than before.
He has improved, but not at the speed we want. That’s why he needs more frequent therapy, it is not the same thing getting 2 hours a week, than getting 15 hours a week. Studies show that the improvement of doing intensive therapy at least once a year is huge. So we want Pedrito to have this opportunity. He has suffered a lot and he deserves a chance to improve faster.
Because Pedrito is non verbal, in October 2020, he was able to start AAC Speech Therapy, this is a therapy that helps Pedrito to learn to communicate through a device using his eyes. Today's  technology is incredible.  Sometimes people think that he has developmental delay because he can’t speak, and through this device we have learned that Pedrito understands perfectly Spanish and English, that his favorite color is yellow, and that every time he has a seizure he is terrified and that he feels exhausted and confused.
So please, I’m asking you to help him receive intensive therapy at least once a year, to help him have access to more technology that can improve his quality of life. Here is some information about Napa Center that is the place we want to take him every year and the Trexorobotics, that is a machine that can help him walk.
I've been talking about where we want to take Pedrito, but I haven't explained why this place in specific .

NAPA, is A World-Renowned Pediatric Therapy Center that is dedicated to delivering innovative therapy services to children with a variety of neurological and developmental needs. Many children gain more progress towards their goals in three weeks of intensive therapy than they do in a whole 12 months of ongoing traditional therapy. Going to NAPA for one intensive therapy for three weeks cost us approx. $10,000 including the cost of moving to Austin, TX during this time.
On the other hand, the TrexoRobotics, is one of the latest more technological assistive devices for kids with disabilities. Not using our body for what was created (moving) comes with a lot of complications, for example hips dislocation, fractures, osteopenia and osteoporosis, etc. Pedrito already has osteopenia and hips subluxation because he doesn't  stand up, or walks. Having the Trexo gives him, not only an opportunity of walking, but also prevents all future surgeries because of fractures. Getting the TrexoRobotics cost $35,000. This is their website so you can check it out, it's an amazing technology. (https://trexorobotics.com/) 

Thank you so much!! 
Pedrito's Family