Little Boy With A Big Heart

LITTLE BOY WITH A BIG HEART This is my son Reynaldo "Lil Rey" Manjarrez 3rd, and he was born with a defect in his heart. The medical term is hypo-plastic left heart syndrome, left side of his heart was not developed . Lil Rey has had three open heart surgeries to help correct the problem. These three surgeries were just temporary solutions, just to give him some time. Ultimately, a new heart has to be given to him. As of 9-1-17 he has Been placed on the transplant list. For this reason I am starting this go fund me account, to help with expenses for relocating to Seattle for this winter. Lil Rey is 9 years old and attends school at East Valley Elementary in Washington. He has two sisters named Nena and Neni. His interest include mine craft, soccer, Seahawks and baseball, church, cub scouts. His school interest are math and science. He love to go and play with his cousins and spending time with all his family. Family bar-b-que's are his favorite. Lil Rey was born April 14, 2008. To Rebecca and Reynaldo Manjarrez. After eight hours it was discovered that something was wrong, Lil Rey was not eating and his oxygen levels were to low for him. So he made his first plane ride to Seattle. It was in Seattle that he was diagnosed with hypo plastic left heart syndrome. We were informed that he would under go a series of three open heart surgeries. First was the Norwood procedure ( 7 days old), bi-directional Glenn shunt procedure (8 months old), Fontan procedure ( 4 years old). Plus an additional surgery to remove scar tissue after the Fontan procedure. So for instance in a normal heart the blood would travel from the left camber of the heart to the lungs, for oxygen, then to the right side and finally to the body. Lil Rey's starts in the right side then goes to the lungs then to the body. So he is pretty much living with half a heart. Imagine using two water pumps to water a field. Now if you were to only use one pump it would make a big difference. That is how I like to explain it to people. All surgeries, except for the first, were planned and weren't a financial problem for us because we had planned for them. After the Fontan procedure, certain children like my son, develop PLE ( protein loss enteropathy), which is the loss of protein. The loss occurs in the stomach and is a current mystery to doctors. Their is no known reason for this to happen. PLE is our current battle. It appeared 6 months after his last surgery and we were lucky enough to put it into remission for four year. It came back in October of 2016. As you can see he has good days and bad days. On the bad days he swells up and looks like a boxer who lost a fight. He is also lethargic and spend most his time sleeping. On good days nothing can stop him from what he wants to do. He got into soccer thanks to his older sister and got to play for a Yakima league that had to be coached by his mom, of course. His playing time was limited due to his condition. For now Lil Rey is taking a whopping 45 pills a day and is given treatment once a month in Seattle. The ivig treatment is giving him protein through an Iv. In addition to that he is having blood drawn one a week to check his blood level. He is also on a low sodium, low sugar, low fat, high protein diet. Can you imagine how hard that is. It's crazy expensive to eat healthy. But he is not alone, to our dislike the whole family is now participating in this diet. So now that I have given some info as to why I am in this situation, I will talk about why I am asking for donations. Lil Rey has been placed on the heart transplant list as I said above also for after the surgery, he will be staying in Seattle with his mother for 8 months for up to a year for rehabilitation and check ups.
I would like to thank you all for taking the time to read my story. It is greatly appreciated and means so much to my family and I. All donations will be placed in an account and will not be used until it is needed.