Category: Stories & Interview

Hi! This post is by Casey’s mom, Chris Duane.
First off, I thank each of you who have made a donation to our Foundation through our Go-Fund-Me page. Every dollar counts and as you read on, you’ll understand why.

As you may or may not know, I have spearheaded the formation of the Foundation for Casey’s Cure, Inc. I proudly announced in June, 2019, that I was going to raise the money needed to get someone to work on Casey’s defective gene. Period. And I wouldn’t take or think for one moment that it wasn’t attainable.

I mean, sure, I’d never raised $350,000 before, but hey! Just because I haven’t done it, doesn’t mean that I can’t!

You know how a dog has that adorable way of cocking her head at you? And you’d swear that she was asking, “What? What does that mean?”

Well, I don’t have to explain to you that when humans do that to each other… well… that’s what so many people have done when I announced that I was going to find a cure for Casey. They’d cock their head, tap my arm, and say what a strong and determined woman I was… but the truth was, they didn’t think there was a snowball’s chance in hell that I would succeed.

And they weren’t the only ones who were doubters, but…

There was no way would I be persuaded that this was a ludicrous idea.

First, not-for-profit charitable foundations have pretty strict IRS guidelines. So I hired a lawyer who specializes in charitable work. (She works out of Nevada and Georgia. In this day and age, distance is of almost no matter. ) We received our 501(c)3 designation letter in March, 2020, retroactive to the Foundation’s commencement date of August, 2019.

​While we were waiting, I also knew we’d need a Board of Directors, and the ones at the top of my list were my daughter-in-law’s parents. That we have been fortunate enough to a family member with strong ties to the research community around the US…well, I can’t even begin to tell you what it was like when I received the email from him that said he had found a group of researchers at the University of Missouri who have spent the last 25 years working and researching how the TTN (pronounced tie-tin) gene.

For background, the TTN gene is the longest protein chain in the body and for some reason, finding researchers working on that chain was… disappointing, to say the least. When this family member put out Casey’s information to his community, TWO groups of researchers popped up! After explaining the medical details of her genetic testing, these researchers are anxious to get to work on Casey’s Cure.

​But, when our family member came back with the information that two or three sets of researchers are VERY interested in working on Casey’s Cure, well, my heart just fell to my stomach… I couldn’t believe it. And he closed his email with….”this might not be such a crazy idea after all…”

This is my journey. To find researchers who can dedicate a good portion of their time working on Casey’s Gene and to find people who are empathetic enough to make a donation… of any size.

The researchers need $350,000 to begin work. Then… they’ll need more, but I like to take on challenges one step at a time…so to $350,000 we go!

​Well, today was one of the first events in constructing our Wellstar promotional campaign.  Patricia R, Wellstar’s Public Relations Director in LaGrange, GA, arranged a photo-shoot of me with my family. The backdrop was beautiful and the terrain surreal. Until the challenges that the average person does not see become quite visible. And so… my support system! What you may not know is that muscular dystrophy begins with the smallest changes; ones that are barely noticeable to just about anyone but me. Well, except for my family.  They notice the small changes in my walk, the increasing struggles I have with picking up things that I’ve dropped onto the floor.  (The bending isn’t as hard; it’s the getting up part that’s hard… and gets increasingly harder bit by bit.) Sometimes I feel guilty having and using my Handicapped Hanger when I shop. What you see is that I have a bit of trouble getting out of the car, but it’s not something that may really catch your eye. You probably notice me, after I’ve parked, walking away from the car. I look like I walk pretty well! “Heck”, you say, “Why does she have a handicapped parking spot? She looks okay to me!” What you don’t see is how hard it is for me to pick up my legs to walk; how hard it is for me to keep my knees from buckling. Or the pain that comes from the strain on my knees and back because my muscles in the lower half of my body are failing.m I admit, I can make it look like I’m just like everyone else… What you don’t know… is how hard it is for me to do that… So… back to my support system… I’ve been able to hold it together for the last 2 1/2 years. I’ve been able to keep up with the house work, shopping, dinner, laundry, homework, football games… but all that has changed. Dinner time became a bigger and bigger stressor for me and my family. In a two working parent household, someone (I’ll let you ladies guess who…) is generally in charge of getting dinner together. But week by week, it became harder and harder for me to do that. You see, I’m a nurse in a busy pulmonary office by day. And I take great pride in my work. I work with a great team and feel that it’s my obligation to be sure that the patient schedule I’m responsible for runs as smoothly as it did before my m.d. And the patient schedule ran as seamlessly as possible. I always want my patients to come to the office and see someone who was focused on them, who made them the priority and left them feeling like someone cared. As you may suspect, many of them are critically ill and as a nurse, I have vowed to do my best to help my patients, and their loved ones, through their most difficult times. As you can imagine, it was a tiring goal even on the best of days… but now… my will is as strong, but my might is not. Coming home to the chaos of no dinner with a hungry family facing an exhausted mom was just becoming… too much. I am fortunate enough to have a mom and step-dad (Bob) who love all of us enough to leave their lives in New Jersey and come to Georgia to help out. Between us, we’ve divided up the weekday dinner schedule: Hubby takes dinner on Monday, Tuesday and Thursday are Mom & Bob days; Wednesday is Joshua, my oldest son’s day and Friday, Saturday and Sunday?  Well, that’s a toss up!  We enjoy the weekend without the weekday exhaustion.  Joshua also cleans the house on Wednesday’s and occasionally, mom comes down and hits up the bathroom for me.  I grocery shop on line and drive-in/pick up to help me manage the weekly food grind. All in all.. …. I’m lucky to have such a great net around us. It lets me spend my energy on the things are important to me. And my family is at the heart of it all.