ESPN 9-11-17 BY MICHELLE BEISNER

we have a good one for you tonight so the name bill johnston may not be one that nfl fans are familiar with but that name has been synonymous with the chargers for the last 38 years bill started as an intern with the team in 1979 rose through the ranks and in 1990 became the director of public relations trust me that is a very important job on any nfl team bill is really good at what he does and highly respected in the nfl so when the chargers announced that they were moving from san diego up to l.a bill had to make to make the decision as to whether or not he was going to go too and for him the decision was easy [Music] for the last 10 years bill johnston's mornings have begun the same way just after sunrise the longtime chargers pr director drives to the same location for one very important reason to visit his wife ramona hi baby i just check in every morning tell her anything that's going on in my world i don't know if it sinks in i don't even know if we're connecting but as long as there's that chance i'm just going to keep talking to her every day remember this is one of those times we always talked about where we would do whatever we had to do to make people aware of this disease right and so that's kind of what we're doing right now bill and ramona first met in high school but it wasn't until college that their real love story began the couple married in 1983 and later became parents to jared and hayley how would you describe your mom's personality she was a little more reserved i think but probably the sweetest anyone would tell you she's probably the sweetest lady family to ramona is everything and her kids were everything to her ramona left her career in teaching to be with her kids full-time in 1990 bill became director of public relations for the chargers life was good for the johnston family until the late 90s when everything changed my mom had um a couple car accidents kind of randomly and you know within this short period of time i started to notice physical changes in her the way she walked she you know it just became a little jerky she was also starting to forget things she could just tell i think that something was wrong [Music] after months of appointments and tests bill and ramona finally found a doctor who delivered the sobering news we walk in and yeah we get the result it was ramona was diagnosed with huntington's disease a rare brain disorder that deteriorates a person's physical and mental capacities there is no cure and the disease is fatal [Music] people call it the devil of all diseases because it combines symptoms of parkinson's als and alzheimer's into one disease and i don't think people fully understand that until they see it [Music] while the disease slowly took over ramona's abilities to walk and speak bill and his family took action using their voice to tell their story using their legs to raise money we started running marathons and just accepting pledges and he started several events including the shoot to cure hd and then our celebration of hope gala since joining the san diego chapter of the huntington's disease society their efforts have raised nearly four million dollars with no signs of slowing down we're going to raise enough money to get it to the right people that will find a cure [Music] in 2007 ramona was moved to a long-term care facility and she's been there ever since so in 2017 when the chargers announced they would be leaving san diego for los angeles bill johnston who spent 38 years with the team decided not to go how difficult was that decision to make it wasn't hard you do what's right for your family what's best for your family and do what's right for her to try to relocate her was wrong but as one door closed another opened an unexpected gift from the past while going through old boxes bill found journals and notes written by his wife early in their courtship i know she was writing these things down and i read you know some things that maybe answered a lot of questions for me too suddenly ramona had a voice again last night i went over to bills i don't know why but we have never been closer the thing that has bothered me the most i now understand he's never really said that he loved me i miss everything about her you know just as i'm sure she misses everything about her family i can't imagine anyone going through what she's going through with any more grace than she's going through it anymore strength she's an amazing woman [Music] he was really quiet for a long time and then he just said if you only knew how long and how strong i've loved you i swear when he said that those words my heart jumped i haven't actually said this to anybody but i think we're really meant to be together [Music] and maybe the most terrifying aspect of huntington's disease is that there's a 50 percent chance that you can pass this on to your children their son jared got tested when he turned to 18 and thankfully his results were negative their daughter haley now 29 has not been tested but told me that if and when she gets married she may change her mind as for work while it didn't take long for bill to find a new place of employment he now works for the san diego padres as special adviser to executive chairman ron fowler susie