community and do amazing things and contribute and so many amazing ways today my guest is a young man shot squares shown suffers from cystic fibrosis he's here in the studio with us with his father mr william squires they both have done a lot to increase awareness in the community about the symptoms of the disease and helping the research process so let's hear more foundation would you like to tell a little bit about the symptoms and what is being done and he said sure sure you know cystic fibrosis was actually discovered back in the in the late fifty's and it just recently we've made significant until he's about five years old because of some things that you know we need to have been tested for of course you know we were devastated we found out that he had this disease but you know we realized then that we not only did care for sean but we also had to raise money to awar and you know find drugs that will improve the life you know extend the life and also prove the lifestyles of those who have it so my family get very very involved in fundraising and where thirteenth year right now we've raised over two million  job since sean since he was diagnosed has been you know some really and i think it's a play on words great stride because it's a fundraising campaign that foundation has but there has been great strides has been to drugs that have been developed that are forty five minute sessions a day before i brought him here today he did a session and when he gets home after this he'll do a session for forty five minutes so him go out a friday night to see his friends in you know do what normal kids do is going to have to wait a little bit until he does this but fortunately shaw does prescribe to as up you know the treatments and i think that's what's really kind of help them so you have played such an a strong on and not only in awareness but the such but also every day that you have to support him that it be and school and everything and you have been in school constantly so it well a few in october actually i was in the hospital for continue your study despite life threatening conditions and all that that appeal and all that time that you have to spend on your wellbeing is admirable what you have to do and i think the parents there's a whole lot of awareness about the symptoms the kind of message the kind of knowledge that they need to go yet what would be first of all i want to give credit to sean's mother because sean's mother is the doctor the nurse practitioner the mother i can't pronounce of the medications that he's taken she can actually spell and so she gets all the credit for making sure that sean does what he has to do but  as far as you know i think a lot of people when they find out their child has any type of disease or respect especially life threatening diseases i think are some parents are kind of go to a shell and don't really want people to know or don't really want to talk about it and almost make believe it doesn't exist in our case we you know we knew that we had a lot of contacts in my world in particular had a lot of contacts and we knew that we could possibly make a difference so we went around telling everybody that our son got cystic fibrosis we educated him on it and a lot of incentives amazingly people had heard of it but they just didn't know how it impacted somebody it once they started finding out you know one of things we share with people there's three things that you need i believe you need for a living you need to be able to need food you need water and you need air and sean on food and air he's in cystic fibrosis in fact and so his lungs don't function like a normal person's lungs and his pictures of the digestive system don't function so too are the three basic things that you need and or something other people don't realize is that he really can't be around other people that cystic fibrosis because it could exacerbate the disease in both of them to get back to your original question i think parents have to really say hey you know what we can make a difference even if even if they don't have the resources i mean just letting people you know awareness you know doing fundraisers whatever whatever it takes every little bit helps you know to stay in new jersey is about six hundred vigils that  fibrosis and only about two hundred families actually go out and fun race you know if we can get fifty percent of those four hundred that don't you can only imagine how much more money we could raise and awareness as well right absolutely just like you said that people don't talk about it so that could be stigma or they get so emotionally drained with all that that they have to go on and be pieces to help the child so all the attention might be just focus within this is what it takes to rea my friend sean test cystic fibrosis this life threatening kinetic izzy's affects his lungs and i just hope people like shawn every breath is a struggle each day is a fight against the damaging right now there is no cure but we are closer than ever before your you were just a small kid you know as we see you he is getting ready for his morning and you're starting your day that is that is really an eye opener to what  it and that other people can make a difference and change the outcome or as well as these people clearly the market will and just looking at that what it takes for someone would see have to to go through want to daily basis are something else that you had mentioned in our conversation that shawn would take about eleven thousand pounds a year eleven thousand pills eleven thousand is a huge number to summer for enzymes from the digest food but others are for vitamins is a new drug that is take called or combi that just came out in july we're going to see how that impacts them but it's a lot it's a lot and it's you know driving down here today message on her way back to grab something to eat you have your pills and he goes yes to do it it's one of those things consciously you know you can't leave your house without the keys your driver's license your wallet he can't leave the house without his pills e seem like if someone just walked why you would not know that so that's that's i think my hat's off to you that's  york and that was more the craziest experiences of my life just playing music for people going crazy to what i was doing if i could do that for the rest of my life and yet that's for love to do what you have to say  do that well you know what the kind of music we're talking about the look on it dance music for a guy my age you know more bruce springsteen billy joel all those guys it's it's it's it's different but i've learned that you can't tell you should the music that your kids are going to like yes but the thing about shawn and about you know my other children is that you know you hope that they find a passion in something and he is definitely found his passion in electronic dance music he's know finding passion a lot of kids these days they're lost because they don't have guidance proper guidance or this too many distractions or they don't know sometimes so having chosen w he's going to do that i think he's very very talented and i think he's going to find his way and do what he wants to do i'm sure he will and i'm sure that you inspired a lot of people and this already is telling me that he's creating music connecting with people wants but the disease does affect some intro of one of those where he's just not he's never really really hungry yes to be reminded to eat but he can eat there's no limitations at all so which is in a way it's a good thing to do you don't have to really be critical about what can go inside so right so nutrition wise do you have to take additional precautions for him that he gets put up a nutrition even he's not feeling hungry you are getting appetite i just really have to because it's hard for me to gain weight because of my digestive system really can't properly digest food so i need to intake more calories than what a don't so you have to do that job yourself when you are in college is right or you're preparing ok so how do you feel sending him to california all the way from new jersey to california when i was first informed that this is what he wanted to do it was that immediately now you know it's i don't know that he's ready to take care of himself you know there's a lot of things he has to do with and i went to college i went to a different college but you know most kids who go to college the first thing they say they do is they stop doing the things they're supposed to do they start you know there's no more rules but he has a rule i mean if he wants to you know graduate he wants to perform or he wants to follow his life dreams he back and forth to the west coast to make sure he's ok so this is a been the expensive proposition but you know when i initially thought no it was really i was more selfish for me because i just didn't want to go for that for way i was worried about spent on taking care of yourself and your health why is music still important to you it's just something i follow express myself with and it's something that's always just been fun for me to do and create something original i've always said to myself that i want to create something from nothing and literally when you're creating music you start with a blank template and then you create whatever you can imagine any sound anything that you can imagine you can create and just being able to form that into a song that other people like is something that's always had meaning to me and i've always been the reason why i have passion is because of that i mean the reason why i'm passionate music is because of that and i just want to do that if you continue to get better better better at it by tony you see because i could spend as much time as like want in my room player will i'll talk trying to learn new things or watching you tube videos of tornadoes but it's not going to be the same as attending a four year university were teachers or professionals of the industry teaching you how to do things how to better your sound how to bury music in meeting people and having experiences that you can't have outside of europe where you can school college or wish you the best and i'm sure that you will get the accepted and anything else that you would like to share that audience if there's anything in your life that you absolutely love and there's something in your way don't let it stop you know i wish to said never happened to him obviously but you know the good lord scott has got his reasons we're not sure what those are yet but he has made a difference he is making a difference and i'm sure the future is going to continue to make a difference so i could be prouder of  going people find more information well there's two things if you go to c f f dot org have got just acquired roses foundation dot org but it's the initials c f f dot org is a great way to learn about disease and  and everything that you want to know about the disease and we do have a we participated in the thing called the great strides foundation which is a largest fund raising thing that the foundation does throughout the year now we're still  raising money it will start and we start again every year i wish i could give the website or the the link but i don't have that right now for next year but you know i have an i have a personal e mail address which is our ass