Hard night for LGMD2c momma

Tonight was exceptionally difficult. My oldest daughter asked me about the gene therapy trials and how they were going for lgmd2c. I hadn’t told her about the Sarepta trial being canceled but tonight I did and she asked me why - I told her that someone died unfortunately my nine-year-old was also in the room. She started crying immediately. She said I don’t wanna die from muscular dystrophy. It took me a good 40 minutes to calm her down. My older daughter was much calmer regarding the situation after I put her younger sister to bed. She asked me many questions like “well muscular dystrophy kill me” “does it affect the heart and lungs?” “What’s gonna happen if I can’t use all my muscles” I tried to answer her questions through tears while she sat there’s eyes wide open. She asked me twice while I was crying. I had to get my composure and I did, but she was so strong about it and here I am her 40 year old mother breaking down. I just needed to vent. It’s been a hard night. I had moments where I closed my eyes and went somewhere else cause I just didn’t wanna be there answering these questions… but I told them both in the earlier conversation that we they will always be okay, and we will find a way if and when it’s ever not okay. I hate this disease. I hate talking about it to them, and I hate worrying my babies about it. But I will say I’m doing much better than when they were both diagnosed 7 months ago…