I have to share the story of one of my old friend’s child. His little boy Bryce is only 3 days older than Christiano and this little boy has had one heck of a ride so far in his short little life. And what a fighter he is!
It was really hard to choose between all of the pictures that Sean sent me so I made a slide show of quite a few of them.
My name is Bryce Caldwell and my story is a sad one, but one that needs to be told. I was diagnosed with Hydrocephalus, Homocysteine, and severe MTHFR deficiency (a rare disease which only about 200,000 people in the US have) all before I was six months old.
My long awaited arrival came on February 20, 2009. My parents and my older brother Jordan were elated at the thought of bringing me home and starting our life together. Little did they, or anyone know that our time together was about to take a very difficult turn.
At first, things seemed to be going along with no problems. I was, or seemed to be, a typical newborn. Then suddenly, things started to change; I was sleeping more and eating less. My parents were worried so my dad took me to the doctor. The doctor couldn’t find anything seriously wrong with me, but decided to go ahead and admit me into Casa Grande Regional Medical Center for dehydration. The doctor said I should bounce back within a few hours; however that was not the case. My body was having a difficult time breathing and controlling its temperature so the doctor ordered a Cat Scan of my head. After reading the results of the Cat Scan, they decided to transfer me to Phoenix Children’s Hospital.
Dr. Moss, a neuro-surgeon, immediately came and showed my mom the picture of my brain and it was in bad shape. It looked as if my brain was removed and water dumped in its place. There was so much fluid, that my brain was smashed up against my skull. Dr. Moss said this condition was called Hydrocephalus. He did say my case was so severe that if we had waited any longer they would be planning my funeral.
From that moment to the present, my short life and the lives of my family have forever changed. I have been in and out of Phoenix Children’s Hospital on numerous occasions and have battled through a total of nine surgeries.
During my first surgery, a permanent shunt was placed into my head to help drain the water out of my brain. After surgery, when they tried to remove the breathing tube, they discovered I was no longer able to breathe on my own. The next day, they cut a little hole into my throat and airway and put a trach tube in. My parents have to change out this tube every week for me.
From this point on, things really started to go awry. I came down with pneumonia, had two blood transfusions, and the doctors found thirty to forty bleeds in my brain and didn’t expect me to make it through. They also found a permanent blood clot in my left leg. Just when we thought things couldn’t get any worse, doctors told my parents that due to the damage done to my brain, my eyesight was basically gone.
Although I am home with my family, I am on numerous pieces of medical equipment that allow me to live as normal as normal can be considering my condition. My days are always filled with some form of therapy – speech, physical, developmental, and occupational. Between my therapies and my ongoing doctor’s appointments, my days are never boring.
I know that everything that has happened to me thus far has not been easy on my family. I worry about the mounting bills that my parents face because of my conditions. My parents have had great support from family, friends and the community. I too am thankful for all the people who have, and will continue to help my family get through the difficult times.
Thank you for letting me share my story with you.
Love,
Bryce Caldwell
I wish I was closer because I just want to hug this little guy and his family and help out however I can. Sean was a friend of mine when we were in school and his family moved to Arizona. We reconnected over Facebook when I had just found out I was pregnant with Christiano and they had just found out his wife was pregnant with Bryce. They also have a little boy named Jordan.
It seems so unfair that babies have to go through this kind of pain. 9 surgeries. He just turned 1. 9 surgeries in his first year of life. Why? The only thing I hold on to when I see little children going through these kind of things is that these children will touch someone, open a heart, touch someone’s life, something. All I know is that this little baby is strong. He’s been through more in the life that he has lived so far than I have been through in my 35 years. I honestly don’t know if I’d be as strong as Bryce has been. You just have to look at those pictures to know that this little boy is a fighter. Don’t you just want to kiss those cheeks.
This post isn’t a call for donations, though if you feel so moved, you can visit Bryce’s Caring Bridge page here and in the sidebar is a link to Sean, his father. It’s a call for thoughts and prayers for him. Just keep Bryce in your mind. Keep him on your prayer list. Keep his family in your thoughts. As a parent, I can only begin to imagine what this last year has been like for them. You just want to take it all away, take it all on yourself so that your child doesn’t ever have to hurt.
I don’t just want to dwell on the hard part though because I’m know that Bryce has been such a light in their lives also. First smiles, the love that he gives them, the kisses and hugs, all of those beautiful things we parents cherish.
Popularity: 1% [?]
Link to this page
