Taylor, Batten Disease, Daniel Mule discussed on Charlotte Readers Podcast


The December air and then they were running the fuzzy white ball of Taylor Santa Hat bouncing and time against the clear blue sky the throng of mostly taller runners quickly swallowed my sister. But I I tracked her in Mary. Kate by following the Fletcher team. Sign is a bobbed above the crowd soon. Even that became impossible so I drifted toward the finish area area and I waited. I talked my Toboggan down over my ears and I tried to stay warm fifty three minutes later I was still shivering in the cold old sunshine when Taylor crossed the finish line with her running buddy her fingers curled around the Bungee cord. Her face turned toward heaven. I'd spent so so much of the past two plus years focusing on the ugliness of batten disease but when Taylor Mary Kate cross the finish line together there was nothing ugly about at that moment whereas often felt only anger toward batten disease. My sister had beaten her demons by ignoring them by focusing not on what she'd lost but on what she could still do. She didn't waste her time worrying about what batten disease had taken from her. She paid it no mind and she ran a race before. The trees bloomed in the spring. I'd started running for her slower. That almost gives you chills to listen to that It must the very inspiring to watch her run that race. Sit there have been a handful of moments in my life. That were so profound that I feel like I was. It was out of body experience because today I can. I can reach back into my memories and I'm watching a movie. Reel of my own life and her crossing that finish line. That was one of those moments because here was a girl who is facing every obstacle. Could've said you know the stinks. I quit or I'm just not going to try. And she just she just did it and she wasn't looking for attention. She wasn't looking for acceptance. She did it because she wanted two and she reached out and grabbed it and she achieved all right when we come back after the break. We're going to talk about Some really positive posted news in the fight against batten disease. We're also going to read some more from from this inspiring memoir And we're going to have our riding segment when as well so stay with us. Hey listeners I'm here at the Robinson Spang the Carolina Room with Tom. Hatchet historian residents were talking about books available at the library including those available in this wonderful resource. Tom was his first book. You call the color of law and there's been a community wide read of that in Charlotte because of his so powerful by Richard Rothstein and it is the story of how the federal government local governments other agencies intentionally. conly helped segregate. Our city's not just at one moment but throughout the twentieth century. Some things are still going on today. Through a concept called redlining redlining ending was just a little piece of it. Marina was another piece all sorts of stories and the color of law is really a great place to to start. If you want to understand your city now shifting to books that would be the ROB spangled Carolina Room. You got another one here sorting out the New South City. Yeah this is one of my It's actually my neighbors. Who said about twenty years ago I wrote a book about how Charlotte got segregated? How we became a city of separate neighborhoods? It's black and white rich and poor and I'll a lot of Charlotte History Laid out in in detail I think it's a pretty readable look but peck I wrote it. So maybe not newsouth any talk about participant as you're doing thanks time you find out more about What's available Labrador Charlotte readers. PODCAST and host land. Dissuade are grateful to you for listening to this show if you liked the show. Oh please leave a short written review on Apple podcasts also known as I tunes or the podcast platform of your choice because your review helps authors share hear their stories with more listeners. Thank you for your support. So we're backward lar- King Edward's author of run to the light Laura throughout this journey. You and your family were home with Taylor. The clock was ticking right. Yeah and you met your family met you talk about this in the book your family Connected with other parents of best disease. You go to these conferences so you would meet other parents and you you meet their children to write that are affected by the disease and one of the children you met a child named Daniel and while Taylor was still alive Daniel Mule passed away. That's correct and you wrote a letter. Yes jury that dear Daniel. There must be lots of mountains to SKI DOWN IN HEAVEN. Are they as beautiful as mammoth mountain as your racing down the slopes feel the wind in your hair in the sun on on your face but also the presence of your family and friends. They love you so much and they will always be by your side. You and my little sister Taylor have so much in common just like you wouldn't let batten disease. Stop you from going to the ocean and skiing Taylor hasn't let batten disease. Stop Her from going to school with her friends or singing and dancing. I'm afraid about in disease but Taylor helps me stay strong just like you help your mommy and daddy stay strong. It's it's easy to want to fight for fighters like you Taylor. You are my heroes. I write lots of stories about Taylor even wrote a story about you when you turned ten ten years old in January. I am so sorry we weren't able to find a cure for batten disease in time to save you Daniel. Everyone already misses you here but you are with God now and I know he will keep you safe. Your Life inspired so many people and I know it will help give me the strength. I need to keep fighting for Taylor and all of the other other children with batten disease. Your mom told me that after your surgery she felt like she was seeing that brilliant sunlight of hope for the first time. Even though your body he has left us now Daniel. Your spirit still burns brightly. I'm not surprised that someone who loves adventures as much as you would bring so much hope to so many people your life was a miracle and one day because of the gifts you gave us. I will find mine or this beautiful letter but probably very ordre. Why is so Daniel? I actually never met Daniel before he passed away but he and Taylor had a special bond and connection that that no other children could share. They formed the book ends of a historic clinical trial. That was actually a stem cell transplant on the happened in Portland Oregon that I go into that in detail in the book but Daniels family was the first to have the courage to step forward forward and participate in the safety trial. Not only for the hope and the good of of children facing baton but also others who could someday benefit from this kind of treatment and more than that even though there were almost three thousand miles between us we always looked at things the same way we had a similar perspective. And it's like we just. We got each heather we. We walked this journey states apart a continent apart. But but we did it together now at the time. You wrote this letter There hasn't been any breakthroughs and the research but You emailed emailed me this morning before you came here today. And we're recording this in May won't be out until our season four but You email me this morning with some pretty special news. Yeah can you talk about the. Yeah so Taylor's tail has has done a lot of really great work in different areas from research to advocacy advocacy and beyond. But I will always go back to that. One singular focus the day we were founded and that was to spearhead a treatment a viable treatment. And that would if not save. Extend the lives of children like Taylor and yesterday were you mentioned sitting here in May We got a got word of FDA clearance for a clinical trial to move forward for gene therapy. That's looking at Taylor's forma. I'm a batten disease. which was sailing one disease and we have so we have FDA clearance which is a huge hurdle to cross it doesn't always happen and then also clinical trial sites in the US us in Rochester? And this is work that again this story in the book but we We spearheaded we did this research. We did we funded. This research we met a young.

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