Cystic Fibrosis Podcast 249: We are All in This Together

the views expressed on the jerry cahill cf podcast are that of jerry cahill and guests and not necessarily those of the boomer sias and foundation nothing on the jerry cahill cf podcast should be considered medical advice such advice can only be given by a physician who is experienced with cystic fibrosis the boomer sciences and foundation jerry cahill and guests cannot be held responsible for any damage which may result from using the information on this podcast without the permission of your medical doctor you're listening to the jerry cahill cf podcast presented by the boomer assistant foundation jerrycahill.com welcome to jerry cahill's living breathe and succeeding podcast series this show giving back to everyone we are all in this together was made possible through an unrestricted educational grant from genentech to the boomeras eisen foundation today you'll meet ashley shandell 32 years old from shoreham long island ashley is a high school coach that enjoys lacrosse and running and is also the parks director for the town of riverhead married in 2016 to the love of her life eric they had their first child remy monroe on october 17 2018 and she was diagnosed with cystic fibrosis nine days after she was born the shondells feel blessed to be part of such a great and understanding cf community which they call their cf family they believe in giving back and that we're all in this together whether you have cf or some other rare disease my name is ashley chandell i'm 32 years old i live in waiting river on long island i grew up in shoreham went to shoreham waiting river high school i played multiple sports in high school i continued my athletic career at the university of massachusetts and the university of louisville playing lacrosse in 2011 i met my now husband and in 2018 we had a beautiful daughter remy monroe who is diagnosed with cf when we got pregnant we did all the testing and everything that normal people get when they get pregnant and we found out that our child was going to have cystic fibrosis and from there we kind of just they asked us if we wanted to take a test to find out while we were pregnant if we wanted if they should have if they were going to have cystic fibrosis or not and we chose not to do it because we figured whatever it is it is and we'll figure it out from there right when she was born we got a blood test taken and nine days later they told us that she has cystic fibrosis i was upset at first and then i just kind of thought okay i can't just sit here and be upset and say oh my daughter she's sick she has this disease like let's hit the ground running and learn as much as we possibly can so we went to stony brook university hospital and we met our cf team and went under testing she did a sweat test and all this stuff and i remember the first thing they told us was just don't google it go to cff.org and read you know the information because if you google you're going to make yourself crazy and you're just going to freak out even more so be educated about it i can remember being you know who do i tell first or who do i go to obviously i'm going to tell my family and then i'm going to tell my friends but then you get the reaction from some people you know there's the tears and i'm sorry and you get the child that you know that you're strong enough to and god chose this one for you and to me it's just kind of like i'm not a very emotional person and i always think like i don't i was nervous to come i guess come out about it because i didn't want people to look at us differently and say oh poor ashley or poor remy is she okay can she do this i didn't want it to be like that i wanted to just be like remy has cystic fibrosis be aware when you're around her but she's going to live a great normal life i got involved running charity 5k races to be honest i don't love to run i growing up i played sports so if there wasn't a ball to with a purpose in the game running wasn't my thing but as you get older there's less like adult leagues to play in and what not so i got involved with running i've i did two 5ks prior to running prior to having my daughter and i just did them for fun to just you know with a friend or something they wanted to do so i saw the run run to breathe in new york city which is a close one near us we're like all right let's try this out me and my family and friends we were like let's do team remy so we decided to join it we raised a ton of money um and it was just like a great feeling that wow like we're reaching all these people who are going to donate and learn about the disease with us like i think we're onto something we decided to say let's let's give back to other charities because people might be afraid to come out about their disease we've run for and walked for different charities besides just for cystic fibrosis we've run for fallen soldiers who have you know you're trying to raise money for the family of the fallen soldier depression epilepsy all types of cancers metastatic breast cancer brain cancer kidney cancer juvenile diabetes i wasn't trying to like show off look at me i'm running all these races but i think i was just trying to inspire people to do something you know other than just either feel sorry for themselves or how we can help other people it just makes me feel good i feel good when i go out and see all these people gathered for a great cause there's no anger and fighting and you know as crazy as the world may be it's just you see all these people smiling happy all there for the same purpose i think that's why i like to get involved with it i think with running with remy and having a daughter with cystic fibrosis it's not just about me and saying donate money to me help me you know this is all for my daughter it's about giving back to everybody i think having a child with cystic fibrosis and doing um our running with remy team it changed me to say like wow people are dealing with a lot of different things i may have been either not as sensitive when i was younger having a child in general people always say it'll change you it'll change you well now you have a child with cystic fibrosis and it it changes you as well but differently like i think it made me better i'm not a very emotional sympathetic type of person i'm not the lovey-dovey type that you might uh see but i think it's helped me become that person or just more giving and caring about other what other people are going through and understanding that or trying to understand it so i think that's been an important part and i hope that i can help other people do that i would encourage people to go to different even if you're not going to run a race or just to go it's um it's enlightening and it's moving and you just i kind of got the itch like not that i want to necessarily have to run three miles all the time but i want to go and be a part of the event because you know after the race everybody's there there's somebody usually speaks and you learn about the disease and it's just it makes you feel good and i leave having like wow i feel great i think there's definitely a silver lining for having a child with cystic fibrosis and um i think my outlook on life has changed a lot um i've always just been like that um i'd say i was stubborn and just the like tough skin type of person and i think it's it's softened me a little bit but also it just has made me see life differently that there's more to life and my whole life obviously is taking care of my child and making sure that she lives the best life ever and but i think the silver lining is it's helped me look at other people differently but in a good way to find out more about them than to just judge people on whatever they might look like or anything but find out about them learn about them and listen to what people have to say and educate myself for us with running with remy we kind of made our own little quote that we can that well i guess it's for her that i can fight alone but we can win together so i think that people need to realize that they're not alone and if you just get some people along with you like it's very empowering it makes you feel good so i think don't just if you're struggling with something reach out and people will help help you for everything that we've done with running with remy and giving back to other people although that remy has cf it doesn't define her and life isn't just about cf we do a lot of things that are what everybody else does cf doesn't run our world it's just a part of it

Channel: Boomer Esiason Foundation

Views: 424

Keywords: ashley schandel, eric schandel, jerry cahill, remi monroe schandel, cf, cystic fibrosis, 5k, running, charity, marathon

Id: 0aXmBlOIeOA

Length: 9min 29sec (569 seconds)

Published: Tue Aug 18 2020