Meet Joseph: A Cystic Fibrosis Warrior

First, some words from Joseph :

Hello. My name is Joseph. I am 14 and I have Cystic Fibrosis. 

It doesn’t really affect me in public unless I  am doing long periods of activity like running, swimming, and other things. At home, it is a different

story. I have to do 2 vest treatments and nebulizer treatments every day, and most of the time my legs  go numb and its hard to stand afterwards. I also take a ton of pills, which you know, everyone with CF has to take. I also have CF related Liver Disease.

I find a lot of fun in video games because they help me pass time while doing vest treatments and long  car rides to CF doctors. They also help with the depression from it because they give me a chance to live a magical journey with no predetermined path for me to take, unlike real life. 

Another thing about me is I don’t like the outside, so I sit around all day watching YouTube videos. Believe it or not, that’s where

most of my knowledge comes from. My favorite YouTube channels are Kurzgesagt, Lathland, and Matt  Lowne.  (editor's note: Joe had the opportunity to go hunting with Carson Wentz last fall, and learned that the outside may not be so bad after all!)

I love space because there is so much we don’t know yet about it and my dream is to find an intelligent species other than humans from another solar system, because if we get obliterated by them at least we know we aren’t alone.

People with CF aren’t very different; we just have a disease with no cure (yet) is all. CF is just another  challenge of daily life that people like me have to do deal with, and if you have CF and are reading this,  then don’t give up. No matter what, don’t give up.

And here are some words from his mom:

The initial diagnosis was heart breaking. Joseph was in the NICU, we found out he had CF at 7 days old after having surgery at 5 days old. 

It felt like a death sentence for my child. How do we do this as a family? How do you fight this invisible “disease”? Are we going to lose our child at a young age? Will he be able to have children? Will he need a transplant? What if he cultures a certain bacteria? All these questions were running through my mind, among other fears. It was overwhelming to say the least.

 We lived 4 ½ hours from the hospital and could not stay there every day. Every time we left to go home, I cried and was so jealous watching other parents leaving with their newborns. So, we began going to the CF Specialist every month, and getting overwhelmed with information and medications. We got used to it or as used to it as much as you can. It became our “normal”.

Josephs first "tune up"  was hard on me as a mother. I knew no one in the city/hospital other than his doctors. His veins would blow every other day, so having to do multiple  I.V.’s in a 14-day stay was hard. He now gets a PICC line every hospital stay. 

Now,  let’s talk about the depression that hits the patient while they are in the hospital. It is VERY real. The last hospital stay we had; he broke down crying. We now live about 9-10 hours one way from the hospital/home. We had no visitors, no friends around, confined to the room. Staring at the same 4 walls, the same outside view, gets OLD FAST. Now factor in its Christmas, as you can imagine that makes depression even worse. It’s hard to not be able to help your child by yourself. They may not want you to help, they may need to talk to someone else who isn’t you. I cried with him for about 2 hours before he fell asleep. It was hard asking for help, but it needed to be done. DON’T BE AFRAID TO ASK FOR HELP!!!!!! 

Most people don’t think your child is sick. Why? Because they look healthy. I have been asked for proof of diagnosis from employers and teacher’s because they see him, and he doesn’t look sick. He is almost 15 now, has decent weight and lung function. I get told he isn’t sick, there isn’t anything wrong with him. At this point I explain CF is an invisible disease. I tell them on his “good” days he does 2 hours of breathing treatments a day and every 4 hours around the clock when sick. He takes upwards of 30 pills EACH DAY, specialist every 3 months, hospitalizations as needed. And this does NOT include his normal pediatric doctor or other specialists that he sees. On top of having CF, he also has Chronic Liver Disease, depression, chronic sinusitis, and a few other diagnoses. So yes, he may not look SICK, but he is and we as a family fight it EVERY DAY. It’s not easy, lets face it, it can be DRAINING, and you don’t WANT to do the treatments all the time BUT you DO. Why you may ask? BECAUSE if you/we don’t, we may lose our loved one before its their time. We fight every day so that we can have MORE days with the person. 

Remember you are not alone in this fight. There are other parents/care givers out there that know what you are dealing with for the most part. We all fear losing our child/children early. CF is a BIT*H, but we fight every day to find a cure. This is one fight that I will gladly participate in. 

Your gift can help Joseph, and others like him, to #BreatheEasier. We cannot do the things we do without YOU!