This disease is life threatening! Over the last 22 years Seth has been hospitalized over and over again, too many time to count!! He has had several surgeries and is required to take A LOT of medication daily and do a lot of inhaled mediations as well. He has to have physiotherapy (clapping on his back and chest) done twice a day when well and 3 times a day when sick. These therapies take a lot of time out of Seth’s day. This disease has damaged Seth’s lungs to the point that they are only working at 26% and will more than likely go lower than that while waiting for his transplant. Can you imagine having your lungs work at only 26%?
Below is a posting that Seth put on Facebook on January 28, 2016. This is the first time I have ever heard him speak about what it is like for him to struggle on a daily basis to do the very basic things that most of us take for granted. I immediately burst into tears and can honestly say that reading Seth’s thoughts put in to words on such a grand stage was one of the most heartbreaking things I have ever experienced. I watch this fantastic young man quietly face each day without complaining or feeling sorry for him self and to those that don’t know him would never know what he has to go through. It is so incredibly unfair that any child has to spend their childhood battling this absolutely devastating disease instead of experiencing the joys most children grow up with let alone a loved one.
“As many of you know, I have Cystic Fibrosis. I usually just tell people I’m good when they ask, but it can be a struggle doing everything I have to do each day just to be able to breath at 30%. I often try to picture in my mind what it would be like with new lungs, to be able to breathe with no problems and to have the energy to want to do something everyday. I wouldn’t have to be afraid that if I don’t do my meds and physio for one night that I’d get sick and end up in the hospital (for the nth time). I think of all the activities I didn’t do growing up like skiing, snowboarding, sports etc. It’s hard to just go for a walk outside and enjoy it. I’m more focused on catching my breath. It’s still a ways away, but I can just picture after the transplant waking up and having so much more energy and wanting to do everything. I have no clue how I’ll actually feel when it’s all done, but I know it will be better. Going for jogs, roller blading, swimming, playing with my pets, going for walks with friends. I can’t wait til I can do these things without a struggle”.
Seth is now in need of a DOUBLE LUNG TRANSPLANT in order to survive. With being on the transplant list comes great financial expenses. The average wait time to get new lungs is anywhere between 2 weeks and 2 years!! While waiting for his new lungs Seth is required to travel to Toronto regularly and at times has to stay in Toronto (at a hotel) for extended periods of time so the financial strain will be ongoing until Seth has his surgery to months after for his recuperation. The cost of gas, parking, meals etc gets to be a lot over time. Seth and his family were told that they are required to live in Toronto anywhere from 3 plus months post transplant depending on how well Seth recovers from the surgery. Also in the event Seth’s health deteriorates further, they will be required to relocate to Toronto before the surgery. Could you imagine going through this extremely stressful ordeal and not even being able to enjoy the comforts of your own home while doing so? I wish I had the money to give Seth, my sister and Ryan to help relieve some of the endless stresses that is their life. The costs associated with this whole process could be more than $20,000.00. I have a goal of $20,000.00
If that isn’t bad enough that my nephew has this terrible disease, my sister was injured at work 10 years ago and had to have 2 back surgeries. She now deals with chronic nerve pain that will NEVER go away. This resulted in her going on disability through work and now she has been forced in to medical retirement. Also, Seth’s step dad, Ryan, just recently was injured at work (they work at the same place) forcing him to go on disability. So it is good in one sense because they are able to be there for Seth all the time but now their incomes have changed and not for the better.
I am reaching out to anyone and everyone that is in a position to donate anything you can to facilitate Seth’s new lungs. If you aren’t able to contribute can I please ask you to share this with everyone you know because every little bit counts. Thank you so much with love from our family to yours.