Colton's Story

Images Captured By Jag Nagra
www.turntopage84.com

You would never know by looking at him, but Tiny Light Colton is a stroke survivor.  It certainly hasn’t slowed him down – this sweet soul with a heart of gold wows other children with his BMX moves, and has won many trophies and ribbons competing in Quarter Midget racing.

Within hours of Colton’s birth, parents Wil and Shelley were told that their little boy was gravely ill.  He had an extremely low platelet count and needed many transfusions to stabilize his condition and stop the bleeding.  Doctors diagnosed him with a rare blood disorder called neonatal alloimmune thrombocytopenia (NAIT).  NAIT causes the mother’s immune system to build antibodies that attack the fetus’s platelets, often leading to spontaneous bleeds in the brain and other organs.  As a result, Colton suffered a massive stroke on his second day of life.  “He was the biggest baby in the Special Care Nursery at the time, as well as the sickest. It was heart-breaking.”

Colton’s little sister, Payten-Raye, also had NAIT.  She was diagnosed in utero and through extensive medical intervention before and after she was born, she did not suffer any brain bleeds.

Now, Colton is like a typical almost-nine-year-old little boy.  He loves spending time outdoors with his friends.  While he is at high risk for seizures and has some difficulties with speech, he enjoys going to school and learning new things.  This Tiny Light also had big dreams – he wants to be a firefighter.  The family has learned not to take anything for granted and enjoys every moment spent together. “I have all the hope in the world.  I hope that Colton gets the chance to do and become whatever he wants to in life.  I hope that nothing holds him back.”
 
Written by Elaine Yong

Ola's Story

Images Captured By Jag Nagra

www.turntopage84.com

Sing for Ola and she will likely show you her “bum wiggle” dance.  She loves to clap, smile, and play with her Basset hound, Basil.

Ola’s family members were unaware, when going into the delivery room, that their daughter would have Down Syndrome, but the moment Mom held her, she knew there was something different about her daughter.  She was immediately drawn to her.  It was only an hour later that the news was broken to them.  

Ola has been fortunate not experience other complications along with her diagnosis.

The hardest part for the family was the fear of telling those closest to them and worrying about their reactions; it was a relief when their families did not react negatively.  Looking ahead to Ola’s future, they worry about how she will be accepted and received by her peers.  Mom hopes that by advocating on Ola’s behalf, she can help parents understand that their children have more in common than they have differences.  They try to be as open and as approachable as possible when it comes to discussing Down Syndrome.  If one thing they say makes a single family feel better about their own child’s diagnosis then they have accomplished what they have set out to do.

Ola has taught her family how to take life a little slower and how to appreciate the small things.  Watching Ola develop and learn new tasks has been exciting for the entire family, including older sister Poppy.  Together they cherish each new accomplishment.

Their goal is to raise both daughters the same way and to put all they can into them.  Mom is sure that her Tiny Light, Ola, will be an inspiration to many.

T.J's Story

Images Captured by Rhonda DeMone Photography

Meet TJ, a. strong little man who always keeps smiling despite everything that he has endured. When TJ was six months old, his parents knew something was wrong. While he wasn't progressing at all, his doctors tried to reassure them that all babies progress at different rates. But by the time TJ was 18 months old, he was developmentally only 6 months old, and after seeing a neurologist, they determined that he had cerebral palsy and a global delay. 


It was devastating for his parents to never hear their child speak, to never know how he is feeling, and to not hear him say the words "I love you."  And through this, they've learned to not take things for granted. They say that the most amazing thing through this has been seeing how children around him have grown more compassionate and curious to learn about children like TJ, and seeing people fall in love with his infectious laugh and handsome smile. His mom says, "I am inspired by just how strong a person is inside of his little body. Despite all the pain he has endured with multiple surgeries, he just keeps smiling. I swear, he even comes into the recovery room smiling!" 


TJ is very close to his best friend, his Grampie, who is the only person who hears what TJ is saying without even saying a word. They have a special bond that simply cannot be explained. 


His parents constantly worry about TJ and what his future holds, but they know that his brother and sister will advocate for him and love him. They hope that he will grow up being happy, healthy, and being accepted by others. TJ's mom sums up her feelings with this quote she often uses to describe her thoughts, "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
And so far, TJ is proving to be the best teacher. 


Story by Jag Nagra

Denver and Dawson's Stories

Images Captured by Phorever Photography

This is Dawson.  A go-getter who is busy from the time he wakes up in the morning, until the time he goes to bed. He loves playing with trucks, trains and horses, and although he's been through so much in his young age, you would never know it by seeing him play. 


Dawson's parents found out at 25 weeks of pregnancy that he would have heart problems. He was born with a coarctation (narrowing) of the aorta, and a hole in his heart. His parents thought he'd already been through enough, but while he was still recovering in the hospital from heart surgery, at the age of three weeks, his screening results came back positive for cystic fibrosis. 


Today, Dawson takes up to 15 pills a day just to be able to digest his food, and while the hole in his heart may never close and he may require heart surgery in the future, his heart is doing well. With the medical advancements of cystic fibrosis patients, the median age of survival has recently been increased by 10 years, from 38 to 48 years of age. This gives his family hope that he will stay healthy long enough for a cure to be found. 


The advice Dawson's parents give to other families is to always look for the small comforts in life—there will be signs of hope where you least expect them. They say that reaching out to others has been invaluable, and by seeking out other families facing the same struggles will help you get through the day-to-day challenges. Dawson and his family have found strength within each other, and hope that he will grow to be a happy and healthy young man who follows his dreams. 


Story by Jag Nagra



Meet Denver, a brave young man who loves to play with cars and trucks, chase his dog around the house, and wrestle with his brother. Denver's parents found out 35 weeks into pregnancy, that he had a malformation of the brain called hemimegalencephaly. He was delivered by C-section 37 weeks into pregnancy, only one year after his older brother had undergone heart surgery and was diagnosed with cystic fibrosis. 


Since one side of Denver's brain was developing abnormally, and was larger than the other half, a radical 8-hour brain surgery was performed to help control his seizures, and he was given a shunt to relieve the excess pressure inside his skull. Before his two surgeries, Denver was having up to 100 seizures a day. He is now on three anticonvulsant medications, but still having seizures. 


Denver is surrounded by a tremendous amount of support from his siblings and family. His team of doctors has been amazing, and his aide is a godsend who he loves very much. Thanks to support groups online, his mom has met a number of other mothers in the same situation, and the support they give each other is amazing. Knowing that so many people from around the world are praying for him is uplifting to say the least. 


While technically Denver only has half of his brain, he works hard to learn new things. He's learning how to sit and stand, learning sign language, and understands much of what is said to him. His parents hope that one day, he will be able to walk, talk, be semi-independent and live a seizure-free life. They hope he will be accepted by others for exactly who he is. Denver's family believes he's a miracle. Only 4 to 10 babies worldwide are born with his condition each year, and some of them don't survive infancy. With numbers like that, who could argue that he truly is a miracle? 


Story by Jag Nagra