βWhat about last year? You had a yes day. Oh, yeah. I had a yes day. What is a yes day? Where dad or mom says yes to everything. What? Yeah. For the whole day? What was the first thing you asked for? We went on Amazon, and I got accessories for my Barbie doll.β
Hospitals asked the family to start a GoFundMe for a transplant
βI remember one of the first things when when he faced his first transplant, they one of the first things they said were, you know, like, how are you gonna pay for this? Are you gonna start a GoFundMe? And that was like the biggest slap in the face. Like, so now I've gotta go beg for money to make sure that my kid can have a transplant? And we had excellent insurance.β
Hannah's positive message: everybody's gonna die one day
βHannah, how about this then? What is if you had a some one thing to tell everybody out there that was kinda positive, what do you think it would be? Positive? Yeah. Everybody's gonna die one day. That is that's a crazy thing to say, but, yeah, that's one way to look at it.β
Hannah hides stolen items in her play kitchen fridge
βOne time, I stole my sister's little, mini unicorns, and I've been trying to get those for years, and I actually got them. And then I put them in my fridge, but she finally found them. Now I'm gonna try to steal them again. She has a play kitchen that everybody knows. If they're missing something, they go straight to her play kitchen because she hides everything in the safe spot.β
Cystinosis is a rare disorder affecting all major organs
βSo, technically, it's a lysosomal storage disorder. Cysteine, which is an amino acid, doesn't get transported through the cells correctly. And so they accumulate on all of the major organs. So a lot of times people think, oh, it's just a kidney disease or it's just it is it affects all of the major organs. So, like, my son has had two kidney transplants.β
Hannah's restaurant idea is called Seven Nights of Pasta
βHannah, you cook the food. What are you cooking? Pasta. Every night? So you have seven nights of pasta. Yep. Every night. So if you had a restaurant, it would be called seven nights of pasta? Mhmm. And what would you serve? Pasta. Every kind of pasta. Pasta salad.β
βMy son has had two kidney transplants. In his teenage years. He's remarkable. And now he's working hard to be an EMT. My sister had a liver transplant when we were little. Oh, wow. And so I know what it's like to be, like, around that.β
Hannah's parenting plan: lock screaming kids in the bathroom
βHannah, if you were a parent, how would what kind of what things would you do differently you think do you think? Well, if they would scream, then I'll just put them up in the bathroom and I'd lock the door. I would just put them in the bedroom at, like, a, like, a ginormous wall in the bedroom. Other than, like, lock the doors. They can never get out until they stop screaming.β
Strickland Hope Foundation supports families with chronic illness
βI just I want to be there to help in tangible ways, whether it be financial, whether they need medical equipment, whether they need therapy services, counseling. If the mother and father needs counseling to deal with this new diagnosis, they should be able to have that. If a family is functioning and functioning well and they are whole and they are taken care of, then they can be good caregivers.β