Nathan Glad Extraordinary Circumstance: Osteogenesis Imperfecta (Brittle Bones Disease) Book: Climbing with Tigers His Story: click here.
NATHAN GLAD is the happiest boy you will meet. He takes nothing for granted and is completely genuine in his passion for people and life. You will never find a more grate- ful boy; in fact, his first spoken words were “gank you.” Nathan’s condition is Osteogenesis Imperfecta or O.I. for short (also known as Brittle Bones). He breaks his bones on average once a month—usually a long bone like a femur or humerus. He has been through a dozen surgeries to place rods in his legs and arms— to both straighten and strengthen his bones. Nathan’s biggest goal right now is to walk. He is working hard at physical therapy to get to the point where he can stand and, hopefully, someday take his first steps! Nathan loves playing baseball for his miracle league team, the Angels, and is fascinated with speedy things (cars, motorcycles and rockets).
SHAELYN SIMIS is a brave, vibrant, happy 7-year-old from Meridian, Idaho. She loves ladybugs and making people laugh. Shae was diagnosed in February 2013 with stage III Melanoma. She has a strong fighting spirit which gives those around her strength. As a 1st grader, she enjoys school, and she powers through her days even when chemotherapy makes her tired and sick. Shaelyn’s favorite thing to do is spending time at the family cabin near Stanley, Idaho, with her whole family. LUCKY NOTE: it was after we designed Daisy that we found out ladybugs are called ladybirds in England!
Red Fred Project Workshop Mini Doc | Shae, ID
Jordan Vincent Extraordinary Circumstance: Neuroglial Brain Tumors Book: The Fashion Nest Her Story: click here.
JORDAN MARIN VINCENT is a cancer slayer. First diagnosed in 2004, she's been battling a massive onslaught of neuroglial brain tumors for nearly a decade, and doing it with her own inimitable style. Driven by the mantras of "never give up" and "kick cancer's butt," Jordan has persevered against a rare disease that has scant data and few case studies to guide her team. Sassy, spirited and always ready for a puzzle, Jordan lives every day to its fullest and brings those around her along for a ride.
COLIN KOPACKO is a Mito Warrior. After years of searching for what was making Colin (and his little brother, Jesse) ill and unable to eat, doctors were finally able to diagnose the brothers with Mitochondrial Disease (a terminal illness) in November 2012. Mitochondria are in every cell in our bodies (except for red blood cells) and are responsible for making 90% of the energy our bodies need to live. Since this disease affects those mitochondria, it affects Colin's muscles, nerves, stomach, intestines, hearing, and lungs. Driven to defeat the "germ in his belly," Colin has endured many surgeries, medical procedures, and hospital stays. Even with the long list of medical issues and daily pain he and his little brother face, Colin shows us all that life is amazing and so much fun! He is wise beyond his years and loves to tell jokes. While Mito may be stealing Colin's energy, he has not let it steal his joy as he and his brother show us what true courage is.
ZACHYUS BOWERS is an amazing young guy. He loves helping others and has a kind and outgoing spirit. Zachyus has a medical condition known as Severe Chronic Asthma. Due to the severity of his asthma, Zachyus has to have his inhaler and nebulizer present with him at all times. Zachyus receives treatment every 2-4 weeks at the Northeast Pediatric Pulmonology Center. He loves the game of basketball and football and hopes that one day he will pursue the dream of becoming an NBA or NFL player.
Delaney Clements Extraordinary Circumstance: Neuroblastoma (Became a Star, 20 March 2016) Book: The Lost Lucky Ring
DELANEY CLEMENTS is an energetic, outgoing, kind, funny, and very giving young lady. She was diagnosed with Stage 4 Neuroblastoma cancer in 2010. She is currently receiving treatment (one week on and two weeks off) at Denver Children's Hospital. Delaney is quite the celebrity in her home town of Grand Junction, Colorado. People of all ages admire her courage and her strength. Delaney has been working very hard with her local non-profit organization, Delaney Donates, to bring more awareness about childhood cancer and to remind people the funding that is needed for additional research.
BRIANNA GRINDLE is a lively little 9-year-old girl that lets nothing get in her way. She was diagnosed with a mitochondrial disorder and dysautonomia in 2014. Because of those conditions, her stomach doesn’t digest food correctly. To help her body get what it needs, she has an ileostomy and G-J feeding tube. Despite many years of setbacks in her young life, Brianna always wears a smile for the world to see. She enjoys horses, princesses, and puzzles. She loves singing songs, going to church, and eating ice cream. Brianna appreciates and loves her family and everyone in her life. She looks forward to see where the next adventure will take her.
EMMA BECKER is an amazing, vivacious, funny, tender-hearted girl whose life changed in October 2013 when she was diagnosed with the blood cancer, Acute Lymphoblast Leukemia (B-cell). Despite her diagnosis, Emma is committed to living life with smiles and joy. Even at her lowest moments during the 2 1/2-year treatment process, Emma maintains a spirit of determination and faith beyond her years. She never shies away from sharing her infectious smile with others and telling them about her chemo, hair loss, etc., thereby creating greater awareness about pediatric cancer in her community. Emma is a warrior whose inward beauty matches her outward courage and strength of character. The way Emma faces each day reminds us all that life is to be spent thriving no matter what it throws at us.
ZEKE KEATING is one of the bravest and most determined boys you could ever know. One foot in front of the other, he marches through life’s trials, never stopping to even consider giving up. He has boundless determination and refuses to be limited. Zeke’s condition is clubfoot. He has had 3 surgeries, as well as over thirty casts on his foot. Each cast stretches the tendons in his foot and ankle so his foot can work better. His biggest goal is to be able to walk and run like a normal eleven-year-old, without foot pain slowing him down. Unfortunately, his foot is as determined as his spirit and continues to revert to its previous shape, causing Zeke to fall frequently and necessitating more casting. He will mostly likely need an invasive surgery eventually. He also faces the social challenges inherent in the autism spectrum. While this condition is more of an invisible one, it affects his life day-to-day as he works to navigate the social settings both in and out of school. In spite of these difficulties, or perhaps in part due to them, Zeke remains determined to not give up! He loves playing outside with his friends and has even begun to play soccer with them. Zeke is also beginning to show an interest in art, both in viewing the works of others and in experimenting with his own art—like this book.
Meghan Waldron, 15 Condition: Progeria (Hutchinson-Gilford Progeria Syndrome) Book: Running on the Wind
MEGHAN WALDRON is a confident, persistent and creative 16-year-old living in western Massachusetts. Her love of writing many stories and poems lead to her poetry being selected for publication in Stone Soup Magazine when she was 13 years old. Meghan is a member of her high school cross country and track teams. She competes in 5K races, the 100-meter dash and the long jump. With all that training, she helps support the work of the Progeria Research Foundation by participating in their annual 5K road race. Meghan has a rare, random genetic mutation known as Progeria which causes rapid aging of the body. There are less than 200 people living on earth with this condition, for which there is no known cure. Meghan has been participating in clinical drug trials with the Progeria Research Foundation for ten years in order to help find the cure. Meghan loves all kinds of cute, small critters. She lives with 2 gerbils, 2 birds, and a tortoise. Sometimes when responding to comments regarding her size she has been known to say: “Sure I’m small, but so are poison dart frogs!”
Luke Maeding Extraordinary Circumstance: Double Lung Transplant (due to Childhood Interstitial Lung Disease) and Chronic Intestinal Pseudoobstruction Book: (In progress!) His story: click here.