ALS patient Kyle Connors, wife Katie on life with the disease, helping others

so have on Katie and Kyle Connors of Madison Connecticut to tell us your story about ALS you were diagnosed that first of all we should say you're the picture of health you know perfectly you know that to children everything is going great what happens in 2013 Kyle I injured my back exercising and I but that injury he only went through rehab and the following year I had another back injury and there was around that time that some of my family had noticed that my speech was of a tall sorry but you didn't notice anything and you didn't notice anything yeah because you're both workout galleries and you know and very young so you didn't think that something was was off no and I went to neurosurgeon friend of ours Grannis and appointment with him and during their exam they were initially checking for a pinched nerve or something going on and they actually noticed in my hands the muscle wasting right in between my thumb and forefinger and I did I knew a little bit about ALS at the time and they knew that that was one of the symptoms and I remember texting he you know bored if I have ALS and we met with my primary care and he thought based upon some of my symptoms and what the neurosurgeon saw that they thought I might have ALS Katie so in your wildest imagination did you think that he would have such a debilitating disease tell me about that day that you found out about it at the doctor's office I said no this this is a coincidence he hurt his back at the gym you're wrong I was I was angry very angry and didn't believe it didn't believe it for quit you know what ALS was from the ice bucket challenge I think we all had a little bit of an idea but we had done the ice bucket challenge in support of that and then a month later here we were hearing those same words to us what did you do first how did you how did you how did you mobilize you took it in your angry you're a young married couple with two kids seemingly very healthy and all of a sudden this falls out of the sky what do you do first I think we talked with our family and tried to get second and third opinions and it's not a disease that you can pinpoint very easily so you go to second and third opinions and you keep trying to understand if this is reality Danny yeah I was in d'Arthur Babar Khokar and you know they did blood work to they want to rule out things first and then we ended up having their EMG which they essentially it's- handle like an amp you know a musical amp and they put a needle on the muscle and they can amplify the their contractions that your muscles have and you know we were in there and it was a very I know we were kind of even though it was very somber I'm already trying to make light of bad situations so you had two children to think about yeah let's figure out how we're gonna fight this when they said it is definitively ALS and what type of ALS do you have I it's non familial and it's the slower progressing form okay so it's considered sporadic ALS which it just sort of happens your thought in your head you've done the ice bucket challenge for somebody else now they're telling you you have ALS what is going on inside of you what's the first thing that you think about doing oh oh no what what I might want a man to do my kids like what what did you think initially my first thought was immediately who's gonna take care of kitty and girls yeah and there were sorry there were a lot of nights where you know everybody would be in bed and I were kind of served with we know those thoughts of what's to come and how are we gonna and take this on so you start to mobilize mmm army with my hero fund dot-org let me say that again I hear we fund that org and we have two pictures that I want to show the folks and you're doing this in part this is for your kids take a look at this how do you get this going Katie it was February we started a website and thought that we are not gonna go quietly this was gonna be our fight and we were gonna help raise awareness to find a cure so we created my hero fund org and our first event which you see here was a walk down at Madison Surf Club where we actually celebrated Kyle's birthday yeah how old are you Kyle I'm 36 you're a baby okay and 750 people showed up not in our wildest imagination we have thought our first event would have been that successful now some of those folks showing up in the next picture are part of your website again you have mobilized an army behind this with event after event after event you're surprised at this but not surprised at this cuz I would assume the two of you are the types of people that would do the same darn thing for somebody if they need your help with without a doubt and in every time we have an event or we participate an event and we're out there in front of the community we really are not only raising awareness but it's fueling our fight and helps us just take it one day at a time and know that someday there will be a cure Kyle you're taking part in a in a trial tell me about this trial so early March and we should say that you've only been diagnosed with this about a year and a half or so yeah so you're in a trial tell me much it's a mass general and they harvested stem cells from my hip and they treated it well it's the trial is a double-blind which means I don't know if I got the treated cells or placebo so hopefully they treated my cells with an agent for lack of a better term that helps the stem cells a function similar more nons so ALS affects modern neurons the idea behind it is by reintroducing healthy motor neurons that perhaps the the sick ones will last longer so and I'm sorry in April I went back and they did the transplant into my spine and it was into the spinal column and into my right um Kyle how are you feeling since your diagnosis have you seen a lot of progression I know that you have a slow type of impressing ALS have you do you see things changing everyday do you feel things changing everyday or do you get to a plateau and stay there for a while it depends on the day there are days where my speech is better and moving around better and then there are some days whether I'm tired or you know maybe the the weather is affecting it I might have be more symptomatic it's been a gradual progression but you know there are there's not that new thing every day I see yeah tell me about you guys as a couple how did you meet you're from Massachusetts you're from Connecticut tell me about who you guys are as a couple matter first job out of college and we lived in Boston and we were saying earlier my ultimate goal was to come back to Connecticut so we spent several years in Boston working together loved the city enjoyed life young and then when we had our children and moved back to be closer to family yeah yeah you Katie was pregnant with our oldest mo when we moved back and there was that was the reason they come back because we it was important to raise our kids in this area and look at the support you're getting with nineteen organizing what's coming down the pike with this website with these events are the costs of medical costs astronomical already are they are they headed in that direction they're definitely headed in that direction we're right now looking to make alterations to our house that are handicapped accessible first-floor bedroom handicap bathroom ramps opening up doorways so that takes a lot of effort and we need to do that by the fall we think that it's progressing enough to do that now have you found any and I can't imagine what you the two of you are going through but have you found some strengths you didn't even know that you had in in this predicament if we can call it that I kind of I know I admittedly when I was first diagnosed had very hard time with it um but I drew strength from Cavey and you know she's kind of the rock and you know even on her all the support we hear from people is you know it's you know it's our close friends and family and then you know it's their friends and you know you meet people and you know I know I know your historian we're praying for you and it's it really you know gets us the motivation to keep fighting and to not let any other family go through this and have to deal with this journey that were for us to raise awareness and come out and be in the forefront of the community is so important because we do need to find a cure so that no one no one needs to go through this did you know you were this strong I've always been a fighter but never knew I'd have to be this strong for the for the whole family but I have it in me and we're gonna keep fighting every day is there a message for other folks that will hear your story what is your message to others about how you can do this and there's no there's no book on how you do this no there's certainly not I take one day the time and live in the moment because you know looking ahead you're gonna miss some things that are really important and that's definitely something that I've learned where you know that small moment with Healy or mm Brice I mean that you know the just worth you know more than its weight in gold those are pretty profound words Kyle and Katie thank you so much for coming on and showing your bravery to other folks thank you for Kamio suits better listen boys just go spend all night kissing in the bumpers are you then Will Smith John little sidetracked by my solution can keys in the dorm and it's also a metaphor

Channel: WTNH News8

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Id: GFkW6ry_ItQ

Length: 14min 39sec (879 seconds)

Published: Mon Jul 20 2015