My name is Nyomi and I am 1 in 40,000 who was born with a sacrococcygeal teratoma tumor. The tumor formed at the base of my spine. Due to multiple surgeries and the location of the tumor, I have some nerve damage that impacts my bowel function. I use enemas to avoid constipation. You would never know that I have any nerve damage just by looking at me. I love all things princesses and my favorite colors are pink and purple, which are the colors of my butterfly!

My name is Lucy and I am 1 in 40,000 who was born with a sacrococcygeal teratoma tumor. When my mom was pregnant with me, my parents went to two different doctors who said I wouldn’t make it to delivery because my tumor was so large. My parents refused to give up on me and searched across the country to find a hospital that gave them hope. I am a fighter!

I have neurogenic bladder which means my nerves are damaged and don’t communicate properly from my brain to the bladder. This leads to trouble controlling my urine. I started doing catheters every few hours to empty my bladder when I was 1.5 years old, after being hospitalized multiple times for urinary tract infections. Catheters have changed my life! They keep me free of UTIs and they make sure my bladder and kidneys stay healthy!

I love playing with dinosaurs and fire trucks. My butterfly is blue because I have a blue “iconic Lucy” shirt which I’m pictured in above.

My name is Jackson and I have ADHD. ADHD can make it difficult for me to focus. I take daily medicine which helps me focus and helps with my self-control. I am wearing one of my soccer shirts because I enjoy sports, especially soccer and hockey. My butterfly is orange which is the color commonly associated with ADHD.

My name is Alonzo and I am visually impaired. I have a cane and wear glasses to help with my vision. I am also learning to read/write in Braille. Braille has raised dots that allow visually impaired people to touch the dots as a way to read/write. I love playing video games in my spare time! My butterfly incorporates the colors from the color coding system, ColorADD, which helps color blind people identify colors.

My name is Hudson! I have asthma which can make breathing difficult. I use an inhaler every morning and night to ease my symptoms. I also take a Dupixent shot monthly to help with my asthma. I am allergic to several different types of food including peanuts, tree nuts, eggs, shellfish, soy, gluten, and am lactose intolerant. I have a weaker immune system due to all of my allergies. I usually get croup every time I get sick and end up needing breathing treatments. When people ask what I’m allergic to I usually say “earth”. You would never know this though because I am a happy kid and know what I can/cannot have! I enjoy playing basketball and love the University of Illinois, so my butterfly is colored blue and orange… Go Illini!

My name is Evie! I’ve used an inhaler since I was 2 for asthma. It was a difficult adjustment at first, but it quickly became a part of my routine. I love dresses and recreational cheerleading! My butterfly is red because I love wearing red lipstick!

My name is Henry! I am autistic and do ABA and speech therapy. Applied Behavior Analysis (ABA) therapy is a behavioral therapy that helps me improve my social skills. I enjoy all things cars and trucks! My butterfly is rainbow colored representing the autism awareness colors.

Rachel was a typical 16 year old when she complained about a spot on the back of her thigh that didn’t feel right. After ruling out several other possibilities, she was diagnosed with a rare form of cancer, known as soft tissue sarcoma, and a tumor the size of a baseball was removed from her leg. She recovered from the surgery, had 6 weeks of radiation, and returned to being a normal teenager. Sadly, the cancer returned to her lungs in the fall of 2008, and she lost her battle on January 18th, 2009. She was an amazing young lady who never complained about her struggles.

She loved singing and was part of several musicals and performing groups in high school. She has inspired a huge number of people who either knew her or have heard her story. While her time with us was short, she lived life to the fullest and has left a lasting legacy. Rachel is the sister-in-law of the author, Shelby. The scene created is based off of a memorial bench in Rachel’s hometown. Rachel’s butterfly is purple, her favorite color.

My name is Lincoln! I have cerebral palsy, developmental delay, seizures, hearing loss, vision impairment, and a grade 4 brain bleed among several other diagnoses. I wear hearing aids in both ears, braces on both legs and glasses. I have learned to become an advocate for myself and my peers! Although life has put me on a difficult path, I consistently show perseverance to better myself! I am a happy kid who truly enjoys life.

I love sports (as you can see from my left leg brace) but specifically hockey – I play sled hockey with a local nonprofit. My right brace is the USA flag because I got to play with, learn from and watch the U.S. men’s & women’s Paralympic sled hockey teams so I wanted a brace to match the same pattern as their custom sleds. My glasses and hearing aids (both ears) are blue – my favorite color! My butterfly is green, the color for Cerebral Palsy awareness.

My name Ryer! I was born with Cerebral Palsy and have had multiple surgeries including: stem cell transplants, SPML (a surgery on my legs to release adductors), and Strabismus surgery to straighten my eyes. I love eating oatmeal and bananas, bath time and books! My butterfly is colored green for the cerebral palsy awareness ribbon.

My name is Jackson and when I was 5, we learned that I had a brain tumor, called craniopharyngioma. It was exactly in the middle of my brain, my optic nerve was on top of the tumor and my pituitary gland was right below my tumor. I was extremely lucky and they were able to remove all of my tumor during a really long surgery, but I still deal with some lasting effects from the tumor and its removal. Because the pituitary gland had been disrupted, I didn’t grow for 2 full years! I’m a little shorter than some of my friends, but I’m starting to catch up now. Also, because of the disturbance to the optic nerve I have a slight blind spot in my left eye. It doesn’t bother me much – my body has adapted to it. I get migraines on a weekly basis, and sometimes I see things that aren’t there or letters and or numbers will move around. This can make some things more challenging, but I’ve learned to work with it.

Because they had to go through my brain to take out the tumor, some things are harder for me and my brain gets tired really quickly, so I have to take, what we call, short brain breaks to give it time to rest. Because of my tumor I struggle with reading. I prefer things like short informational articles. I also do a lot of things auditorily like have my computer or phone read things to me or I listen to educational videos. Instead of typing, I will often talk to my electronics and have them type for me. I really love math and science and I’m hoping to go into something related to one of them, possibly physics, when I’m done with high school. These classes can be a problem when numbers move, but I’ve learned to check my answers and sometimes I just have to wait to work on something until my head is willing to cooperate! At least I have a cool scar from my surgery!

I have a lot to deal with every day, but I try not to let it stop me from doing the things I enjoy. I play trumpet in our school’s concert band, pep band, marching band and jazz band. My absolute favorite sport I do is taekwondo and I have won a world championship in it. My butterfly is colored grey for brain cancer awareness.

My name is Cora and I was born with Trisomy 21, which means I have an extra copy of the 21st chromosome. Along with physical differences, there are also higher levels of health concerns and physical delays. I was born with a Ventricular Septal Defect (VSD) meaning I have a hole in my heart. I have been going to physical and occupational therapy since I was 3 months old to help with muscle tone. I will also start speech therapy which will allow me to communicate effectively. Every person diagnosed with down syndrome is affected differently. The best advice my parents were given was, “Don’t let Trisomy 21 define who Cora is.” My butterfly is blue and yellow; the colors for down syndrome awareness.

My name is Maeve! When I was 8 days old I was struggling to move both my hips and lower legs. After extensive testing, we were told I had a pathological fracture, meaning there was a mass between the bones causing them to break. My tumor was initially diagnosed as a fibrocartilagenous mesynchyoma, making me the only one in my age group for this tumor and 27th in the world. I was also diagnosed with a genetic condition called pseudoarthrosis of the tibia. This means that my bones have little to no chance of healing once fractured. Due to my fracture at birth from the tumor, my parents had to move forward with a really difficult decision to have my lower leg amputated. I have a super cute prosthetic leg! I love pink, playing outside and babydolls! My butterfly is pink.

My name is Matthew! I have Nager Syndrome which is a genetic mutation in a protein gene that affects the way the bones grow. It mainly affects my jaw which is small and recessed back causing my tongue to fall over my airway, so I have a trache. This also causes the lower bones of the jaw to hit the upper ones so I cannot open my mouth more than a few centimeters. I have a G-tube for nutrition. Sometimes this syndrome affects the limbs. I was born without thumbs and one arm is small and bowed giving me a club hand. This syndrome also tends to affect the bones in the middle ear causing hearing problems, so I wear cochlear hearing aids. I love my iPad and learning! I love anything educational and have a photographic memory. My butterfly has orange which is a color for developmental disability awareness.

My name is Cohen! I have an autoimmune disease called periodic fever syndrome. I get recurrent episodes of high fevers and inflammation. My fevers get as high as 105 degrees and they occur about every 3 weeks, lasting 2-3 days per episode. Other symptoms I get are the chills, lack of energy, mouth sores, and loss of appetite. This disease began around age 1.5 and I am currently 4.5 and still battling with it. I have seen many doctors over the years and have been told that I will eventually grow out of it. My butterfly is red and black, my favorite colors!

My name is Luke and I was born when my mom was 24 weeks pregnant with my twin brother and me. I was 1.8 pounds when I was born, which is what an elf on the shelf weighs. I was tiny but mighty! During my stay in the hospital I underwent open heart surgery, a tracheostomy and gastrostomy surgery, had several broken ribs, kidney stones, rhinovirus, and had to be revived twice with CPR.

My banner says, “Welcome Home”, because I spent 535 days in the hospital after birth; it was quite the celebration that I made it home! My butterfly is the symbol of twin loss because I lost my twin brother, Owen, shortly after birth. Owen watches out for me from Heaven and has had my back every time I’ve hit a medical speedbump.

My name is Tayla and I was born with spina bifida. Spina bifida is a birth defect in which my spinal cord didn’t develop properly when I was in my mom’s womb. I also have executive functioning disorder, chronic migraines, chronic pain and a whole list of other medical conditions. Before I was born, doctors said I wouldn’t be able to walk or do much – but I proved them all wrong! I can walk though it’s difficult for me so I’m an ambulatory wheelchair user because it helps me save my strength and energy. I wear braces to help support my legs and ankles because I don’t have any feeling or control of the muscles below my knees.

I’m a seven-sport athlete. The ones I love are: adaptive track & field, adaptive powerlifting, wheelchair basketball, wheelchair softball, adaptive Taekwondo, dance, and horseback riding. I’m hoping to continue my participation in adaptive field events in college and study sports management.

I volunteer at wheelchair basketball for two different teams and also at adaptive sports camps and veteran’s events in our area. My butterfly is the colors of the Paralympics because I’m working on training for the 2028 Paralympics.

My name is Bailey! At 20 months old it was discovered that I had a cyst on my spine called a syrinx as well as a tethered spinal cord. I was diagnosed with spina bifida. When I was 4 years old, I developed bilateral hip dysplasia due to not walking. I had surgery to fix the dislocated hips and I continue to be on a journey to prevent dislocating my hips. I enjoy playing wheelchair basketball. My butterfly is red and blue to resemble the Cubs; my favorite team.

My name is Daisy Ann and I was born with Spina Bifida. I have a myelomeningocele and a Chiari II malformation that affect the mobility of my lower extremities, my bladder function, and my breathing and swallowing abilities. While Spina Bifida is a common disability, the way it presents for me is extremely rare. Spina Bifida is a snowflake condition and every child with it is unique. Some children with Spina Bifida don’t look like they have a disability at all, while others use braces and wheelchairs to help them move. A small percentage of kids end up needing a tracheostomy, or “trach”, to help them breathe. The tracheostomy tube is surgically inserted through the neck to bypass the airway – it becomes a new airway that is safer. It also allows children like me to use a ventilator, which helps them to take breaths when their brain might forget to tell them to do so. I also use a feeding tube to eat all my meals, which is common for anyone with a trach. My food goes straight into my belly so there is no risk of me choking on it.

I was in the hospital for 3 months when I was born, and at just 2 1/2 years old I already had six surgeries and many, many hospitalizations. Spina Bifida is my disability, but I have many other secondary diagnoses and medical complexities that affect my day to day life and my care needs. Even though I have dealt with more than most children could bear, I am the happiest girl around! I work hard every day doing physical, occupational, speech, and music therapy. I love playing with other kids, especially my older brothers, and I’m happiest when I learn new things by watching others. I can communicate through sign language and by using a speech device; I have so much to say.

My size is small compared to other kids my age and I can’t verbalize, but don’t let that fool you – I am your typical two year old who loves attention and doesn’t like being told no! Some of my favorite things to do are arts and crafts, building with play-doh, and going outside to go on walks and explore nature. I don’t know how long I will get to enjoy life on earth, but I know my life already holds such great impact. There are daisies on my page because that’s my name! Daisies represent new beginnings by the way they close their petals at night and open again in the morning. The name “Ann” means God’s grace. We believe God’s grace is all over my life and that He is using me to create new beginnings in the hearts and souls of those I encounter.

My name is Ellie! I was diagnosed with type 1 diabetes. I have an insulin pump that delivers insulin into my body to help manage my blood sugar levels. I am on a competitive gymnastics team! My butterfly is blue with a dot of red on it to symbolize the diabetes support ribbon.