Living with Progeria: Hear about Zach’s journey with Progeria and Zokinvy

i'm 13 years old uh live in kentucky uh lexington kentucky and um they're just like middle school at 8th that type of thing like doing art sometimes uh so that's that's always fun um it's like cooking that's i like cooking that whatever seems good one of the friends things probably uh pizza because i make the dough like three diets before you slide it out you cook it and it tastes it's my favorite food so yeah i like that hey brandon i know how to cook a lot better now that zach is a cook he yeah when we when we cook it's him telling us what to do what we're doing wrong and how to do it correctly i think he's the coolest kid ever he um he has a very good sense of humor he's a lot of fun got a little bit of sassy to him but he's very smart and um he's he's a lot of fun to be around he's an awesome kid he does really good in school he's very responsible you know [Music] she pretty much said it all uh i mean he's just a great kid in all senses yeah so zach started um daycare when he was about eight weeks old and he had um some funny bumps on his skin on his leg and it wasn't quite a rash it was more under the skin bumps and the lady that was his teacher at the time she was just like this just looks kind of funny she had she had worked with kids for 20 years and she said i've never really seen anything like it you know next time you're the doctor just get it checked out and so his regular physicians didn't didn't know you know there wasn't a diagnosis and um we were sent to a geneticist we've been to a geneticist and then we were eventually sent to a pediatric dermatologist and um by that time zach was probably about four five months old maybe six months old and um they were the people that first said this might be approach area they didn't tell us that they wrote it on the people and six weeks later we found out it took it was six weeks before we found out if it was positive or not and as soon as soon as they said the word progeria you know i knew what the what it was and what the children looked like the first thing we were interested in is just seeing pictures of the kids and seeing how they were and you know brands first comment to me was they all have smiles on their faces you know these kids are happy and and that was a huge relief can you think of anything else you want anybody to know about progeria about the disease or having it or whatever we're we're just normal and we're just you know this is stratified a bit [Music] i came across the project research foundation and i remember i told brandon i was like brandon there's they're doing a drug trial right now with with these kids and and i know that they're going to be able to help us so it was just like and we didn't even know if he was positive or not at that time but you know i think in our hearts we in our hearts we knew but um it was a huge relief to know that we had we had prf and we knew that there was a drug trial going on that was just amazing you know because we were scared and nervous and we didn't know anything about it so that was that was a that felt good that was a huge help i could i kind of feel like zach and that group of kids he he has been in these drug trials with they kind of blaze the trail for the for upcoming kids that are going to be diagnosed and so it's going to be great for for new patients for new children that get diagnosed it's going to be really good and i'm sure a burden will be lifted off the parents as well because they'll know that they have something they can take if i could say anything to new parents of a child that's been diagnosed with progeria i would say don't give up hope there is a medication out there that has been a good treatment and we have a foundation behind us that is continuously looking for a cure and i would just say don't give up hope you have there's a medication now and and we're just hoping for a cure [Music] you

Channel: The Progeria Research Foundation

Views: 1,865

Keywords: progeria research, adalia rose, hayley okines, aging, life according to sam, sam berns, rapid-aging, Progeria

Id: gA57HVPwga4

Length: 5min 21sec (321 seconds)

Published: Thu May 12 2022