CF and colon, kidney, and liver can
Donation protected
My son Kyle was diagnosed with Cystic Fibrosis at 3 months of age. For those of you who don't know what CF is, let me explain a little.
First, it is a genetic disease that causes your body to produce a very thick mucus. This mucus affects every organ in your body besides the brain. So what this means is Kyle has what looks like a tar substance in his lungs.. the primary organ affected. He holds every infection near the bottom where it will never actually leave his lungs. Over time he has developed things like pneumonia, COPD, and other things that most people have never heard of... things like MRSA (life threatening), pseudomonas (life threatening), Staph, Burkholderia Cepacia-- the worst thing a CF kid can get, Asthma, and Ecoli. Almost all of these are life threatening, but Cepacia is the begining of the end of life. Thankfully we have the least severe kind of Cepatia, but it will be more than likely what will close his lungs. Imagine trying to breath through the soupy mess of slime from Nickelodeon. This is his daily lung life.
To combat this he takes 4 breathing treatments that include Albuterol and saline, Tobi, DNase, Coli, and hypertonics. This is helped along with PD 4 times a day also. We have moved to a Vest to aid in the treatments, but each one takes a total of about 30 plus minutes- 4 times a day.
Second, he has a pancreas that does not produce digestive enzymes. So, he can digest carbs, but not protein or fat without the aid of digestive enzymes. He has to take these with everything he eats just to get about 2/3 of the nutrition form the food. Now if this isn't enough of an issue, he developed CF induced Diabetes. It is not Type 1 or Type 2.. honestly, there are only a handful of doctors in US that even understand this type.
This also includes not having normal bowels. Which leads us to this horrible week in our lives. After having a liquid bowel movement for the last 3 months, he was no longer able to move any stool.
We came to the ER after 2 days of no bowel movement. We were admitted and tried everything from regualr enemas, radiological enemas, and a severe laxative called "Go Lightly". Apon doing the last set of X-rays the doctors noticed a true blockage. Thinking it was dead colon.. sometimes happens with CF.. we went into emergency surgery to remove a section of his colon.
The surgeon removed about 6" of colon and during the surgery discovered our blockage was actually colon cancer. Now, we had never heard of a CFer getting cancer, but now that kids are living past 20 the rate of colon cancer has jumped to over 3% getting this. He now has a colostomy bag. While it can be reversed later, it is another mjor surgery.
So now we sit.. and wait to under go cancer treatments in St.Louis at Children's hospital. We have no idea what to expect, what it will do to him aready not absorbing the nutrients from food the way you or I would, and how long we actually have. He was origianlly given to the age 12... he is a fighter... he is now 20 and hoping to get married later this year.
We are asking for your help. We are trying to raise $5000 to allow us to be able to travel the 1 hour and 45 minute trip to Children's hospital 2-3 times per week. We have decent insurance, but the mounting cost of other expenses is staggering. Kyle is one of 4 kids we have. So, we are daily traveling back and forth currently.
We are hoping to make this a little easier on him and us during this time.
First, it is a genetic disease that causes your body to produce a very thick mucus. This mucus affects every organ in your body besides the brain. So what this means is Kyle has what looks like a tar substance in his lungs.. the primary organ affected. He holds every infection near the bottom where it will never actually leave his lungs. Over time he has developed things like pneumonia, COPD, and other things that most people have never heard of... things like MRSA (life threatening), pseudomonas (life threatening), Staph, Burkholderia Cepacia-- the worst thing a CF kid can get, Asthma, and Ecoli. Almost all of these are life threatening, but Cepacia is the begining of the end of life. Thankfully we have the least severe kind of Cepatia, but it will be more than likely what will close his lungs. Imagine trying to breath through the soupy mess of slime from Nickelodeon. This is his daily lung life.
To combat this he takes 4 breathing treatments that include Albuterol and saline, Tobi, DNase, Coli, and hypertonics. This is helped along with PD 4 times a day also. We have moved to a Vest to aid in the treatments, but each one takes a total of about 30 plus minutes- 4 times a day.
Second, he has a pancreas that does not produce digestive enzymes. So, he can digest carbs, but not protein or fat without the aid of digestive enzymes. He has to take these with everything he eats just to get about 2/3 of the nutrition form the food. Now if this isn't enough of an issue, he developed CF induced Diabetes. It is not Type 1 or Type 2.. honestly, there are only a handful of doctors in US that even understand this type.
This also includes not having normal bowels. Which leads us to this horrible week in our lives. After having a liquid bowel movement for the last 3 months, he was no longer able to move any stool.
We came to the ER after 2 days of no bowel movement. We were admitted and tried everything from regualr enemas, radiological enemas, and a severe laxative called "Go Lightly". Apon doing the last set of X-rays the doctors noticed a true blockage. Thinking it was dead colon.. sometimes happens with CF.. we went into emergency surgery to remove a section of his colon.
The surgeon removed about 6" of colon and during the surgery discovered our blockage was actually colon cancer. Now, we had never heard of a CFer getting cancer, but now that kids are living past 20 the rate of colon cancer has jumped to over 3% getting this. He now has a colostomy bag. While it can be reversed later, it is another mjor surgery.
So now we sit.. and wait to under go cancer treatments in St.Louis at Children's hospital. We have no idea what to expect, what it will do to him aready not absorbing the nutrients from food the way you or I would, and how long we actually have. He was origianlly given to the age 12... he is a fighter... he is now 20 and hoping to get married later this year.
We are asking for your help. We are trying to raise $5000 to allow us to be able to travel the 1 hour and 45 minute trip to Children's hospital 2-3 times per week. We have decent insurance, but the mounting cost of other expenses is staggering. Kyle is one of 4 kids we have. So, we are daily traveling back and forth currently.
We are hoping to make this a little easier on him and us during this time.
Organizer
Rob Ayres
Organizer
Jacksonville, IL
