Wilson's Story

Images Captured by Sassy Photoz

Meet Tiny Light Wilson. This four year old enjoys a wide variety of activities including swimming, baseball, playing “doctor” and “store”, and jumping on his trampoline. He also loves anything involving music. 


When Wilson was only 2 days old, his parents were told that he had Hirschsprung's disease. His parents felt overwhelmed and didn’t know what this meant for their son. Due to missing ganglion cells in the bottom part of his bowel, Wilson must wear pull-ups and requires irrigations. It is very hard for his mother to watch other kids ask Wilson why he is still in pull-ups, though Wilson himself demonstrates an understanding of his condition and rarely complains. Wilson also has a speech delay. He works very hard to help people understand what he is trying to say.   


Wilson’s mom fears that he will be teased at school and that he may never gain control of his bowels. Though the future is unknown, this family remains hopeful. “Take it one day at a time and follow your gut.” 


Story by Emily Harrison

Amy's Story

Images Captured by Orange Passion Photography

Meet 7-year-old Amy. This Tiny Light is described by those who love her as 'joyful and in the moment' all of the time. She loves being read and sung to, going for walks, and watching Baby Einstein movies. 


Amy was physically 'normal' until she was a year and half. Her diagnosis of sodium channel genetic disorder came when she was three. Amy is fully dependent for all bodily functions, has minimal purposeful movement, and is non-verbal. She has medical vulnerabilities such as seizures and respiratory illness, orthopaedic concerns, and metabolic, endocrine, GI, neurological problems, etc. 


Amy’s parents knew there was no treatment or definitive prognosis associated with her diagnosis. Amy isn’t like other kids with sodium channel genetic disorder. She is unable to understand an explanation of her disorder. Her parents struggle to figure out how she is feeling physically and emotionally, as  she is unable to tell them. 


Amy's parents will likely outlive her. The fear of the unknown is great for everyone who loves and cares for Amy. She will likely never walk or talk, and will probably always need full-time care. Her parents wish that she will never have to suffer and that she will always have whatever care she needs. They have a strong faith and this helps them to concentrate on Amy, and not dwell on fears.


Story by Angela Stephen-Dewhurst

Sean's Story

Images Captured by Studio 1948

Meet Tiny Light Sean. This 14 year old boy loves video games and playing his electric bass guitar. He knows a lot about cars, is very good with computers, and is a talented artist. His mother also describes him as very mature for his age, as he grew up surrounded by mainly adults (doctors, counselors, and family members). Though he sometimes comes off as a tough guy, he has a heart of gold and will do anything for those he loves.

Sean was born with Congenital Heart Disease (multi-branch pulmonary artery stenosis) and low blood sugar levels. Shortly after his birth, he also developed acid reflux disorder, asthma, bronchitis, and allergies. When Sean started school, his mother noticed that he was having difficulties. Testing showed a learning disability for comprehension and processing. On top of all this, Sean also developed anxiety and depression following two heart surgeries last year, which left him with an aneurism in his chest.

Sean’s mother worries about her son’s health and the fact that he is bullied; however, she is inspired by Sean’s strength and remains positive. “The most amazing thing about all that has happened is that Sean is here, and he has never given up. He is a true fighter and I love him with all my heart and soul.”

Story by Emily Harrison

Tommy's Story

Images Captured by Birds on a Wire Photography

Meet Tiny Light Tommy.  This happy, little two-year-old enjoys singing, eating, playing, crawling and getting into trouble.


Tommy was diagnosed with Down Syndrome at birth, and his parents were shocked.  It took his father some time to accept the diagnosis.  The hardest part of their journey so far is living in a small town with no other children with Down Syndrome close to Tommy’s age.  His parents worry that he might be made fun of because of his disability.


Tommy keeps busy with physiotherapy, speech therapy, and occupational therapy.  He is healthy and his parents are confident that he will reach all milestones of a typical developing child, just on his own timeline.  They hope he lives a “close to normal” and happy life and gains independence in time.
“Having a child with Down Syndrome is not a negative thing, it is just a different type of normal.”

Story by Emily Harrison

Tye's Story

Images captured by Photography by Elma

Meet Tiny Light Tye.  This three-year-old, “amazing little man” loves playing outdoors, swimming, watching movies, and playing with cars.

After many days of illness, including extreme thirst and vomiting, Tye was diagnosed with Type 1 Diabetes, a non-preventable autoimmune disease in which the body's immune system attacks and destroys the insulin-producing cells of the pancreas.  The most severe form of diabetes, it strikes children and adults suddenly, leaving them insulin dependent for life.   Insulin is not a cure, nor does it prevent complications which may include kidney failure, blindness, heart disease, stroke, nerve damage and amputation.  His parents were heartbroken and devastated, but determined to learn as much as they could to support their little boy.

“He is strong,” say his parents.  “He is our hero and our angel.”

Story By Amber Grant

Rachel's Story

 Images Captured by GingerSnaps Photography

Tiny Light Rachel can and will do anything she sets her mind to.  She is a happy, intelligent, and loving little girl who enjoys singing, swimming, reading, and swinging.  Rachel also likes playing practical jokes, especially hiding behind doors and jumping out at people yelling “Boo!”  Her siblings adore her, and she touches the hearts of everyone who takes the time to get to know her. 

Rachel’s parents were told that she might have Down Syndrome when she was just one month old.  They were anxious as they waited for the results of her tests.  When she was diagnosed, they were devastated.  However, they quickly came to the realization that they were given a gift.  Their faith helped them stay strong, and they made a point to focus on their beautiful baby girl, rather on her diagnosis.

Initially, Rachal’s parents worried about her future, but now know that “she will get as much out of life as she wants.”  They hope the same thing for Rachel as they do for their other children: to meet a nice boy, get married, and have a job.

As her parents say, “Having a child with Down Syndrome isn't always easy…but the joy that these amazing children bring, far outweighs the scary stuff.”

Story Written by Emily Harrison