I Stay Home For: Keith April 23, 2020 by Kylie Karley Keith, a 4-year-old from New Hampshire, was diagnosed with Nephrotic Syndrome one year ago, in April 2019. Originally, Keith was responsive to steroids, but relapsed each time doctors tried to taper him off. In October 2019, he stopped responding to steroids altogether. Keith is currently on his third medicine and his family is hopeful this one will work. His mother, Jackey, shares their COVID-19 story. “I stay home for Keith. Our lives didn’t change as drastically as yours when COVID-19 came around. For the last several months we’ve already been wearing masks, secluding ourselves and working to stay healthy. Keith has Nephrotic Syndrome, a chronic kidney disease and has been in relapse since October. He hasn’t responded to a couple of treatments and is now on an immunosuppresant drug which puts him at greater risks for complications from something like COVID-19 but will *hopefully* finally put him into remission. You want to know something that will make you grateful? Spending time at Boston Childrens Hospital. We have spent a lot of time inpatient and outpatient and have met families going through unimaginable pain and suffering. Having to stay home should be a luxury! We still have to go to the hospital a lot but will continue to be careful and are SO thankful for our BCH family and for NephCure for bringing awareness to families like ours. #IStayHomeForNephCure.” Through her personal Facebook page, Jackey Bennett was able to raise more than $1,600 to support NephCure Kidney International’s COVID-19 Emergency Fund!
Rita says April 23, 2020 at 4:32 pm Jackey is truly amazing. She is raising a little boy who brings joy to all he meets. With all the problems she must face she is kind and giving to those around her and she, Tony and Keith are a beautiful family.
Chris Perrault says May 1, 2020 at 11:49 pm Another great example of people making the best of an uncertain time. You’ve got this Keith!
randell kokubun says May 7, 2020 at 9:45 pm My son who is 16 years old now was diagnosed with Nephrotic syndrome when he was 4. Steroids by itself didn’t work. He is 15 almost 16 and is still taking daily meds to keep him from relapsing. December 2018 was his last relapsed, since then he has had 5 immunotherapy IV infusions to keep him from relapsing. So far so good.
Jackey says May 16, 2020 at 3:58 pm Thank you so much for sharing. Despite the daily meds the fact that your son hasn’t relapsed in a year and a half is amazing! Keith just turned 4 and we’re hoping to get him into remission soon and stay that way!
Amanda says May 16, 2020 at 2:43 pm Brave boy , what are you trying for him ? Keen to know as I’m almost out of options now too