Jared's Story

Images Captured by Jennifer Pearson Photography

www.japearson.com

Tiny Light Jared arrived in this world with quite the entrance and hasn’t slowed down. Despite a completely normal pregnancy, he was born unexpectedly 13 weeks early. Immediately, he had to be taken by air ambulance to a bigger hospital and new mom Beth wasn’t even able to hold her new baby.

Jared ended up staying at the Hospital for Sick Children for nearly a year, battling several life-threatening medical conditions.  His lungs weren’t fully developed and he has gastrointestinal issues. Later, his liver and kidneys failed. This little fighter wouldn’t give up. After more than two months on the liver transplant waiting list, he received his transplant in January 2010. Beth says, “He continues to amaze and baffle some of the smartest doctors and nurses around, as his condition is still undiagnosed.”

It has been challenging for Jared’s parents to watch their baby boy undergo countless procedures, surgeries, medications and tests. But they find strength in the amazing hospital nurses and social workers, and their son, “Jared is our hero. He continued to fight and survive through some of the most intensive medical treatment around. He has his daddy’s strength and his mommy’s determination.”

Jared is now 2 years old and he enjoys discovering new toys and trying new foods, especially at weekly Friday night dinners with his extended family. He won’t go anywhere without his faithful companion, a little lion his grandparents gave him on the day he was born. Though the future is uncertain for this Tiny Light, the family stays positive and cherishes every moment together.

Written by Elaine Yong

Casper's Story

Images Captured by Asher Images

www.hamiltonfamilyphotographer.com

 With a due date of December 31st, Tiny Light Casper was determined to be one special baby right from the beginning. After a difficult pregnancy, he arrived 14 weeks early, weighing just 1 pound 11 ounces.  Doctors expected him to be in hospital until at least New Year’s Eve, but this “Little Spirit Boy” proved them all wrong. Casper got to celebrate his first Christmas at home with his parents and two siblings.

Casper spent 76 days in the NICU battling several medical issues.  It turns out mom Amy’s placenta was full of infection, which was passed on to her baby. Casper had to fight that off plus deal with apnea and heart spells where his heart rate would drop dramatically. He also endured two bouts of a severe intestinal infection unique to preemies. Through all of it, this little fighter has thrived.

Now Casper is at home, but he has a few major health hurdles ahead, includingeye disease and surgery for two hernias. However, the biggest challenge he faces is an extremely severe allergy to animal protein. This means Casper needs a special formula that is very costly – and not covered by health insurance. The family is struggling to find a way to pay for the extra expenses. With two other children, 6-year old Anastasia and 5-year old Ephraim, who are also special needs, parents Amy and William are stretched to the maximum.

The family’s first photo session at the hospital included one of Casper’s primary nurses Loretta. “Loretta was so amazing with Casper and was like a second mom she just loved our little boy so much.” The upcoming at-home session will include the whole family.

It has been amazing for the entire family to be together through the holidays. There is a big celebration planned to officially welcome Casper home early in the New Year. And though the path ahead is not easy, there is so much love to pave the way. “No matter how overwhelmed we may feel, when we see him we are just in awe of him. We feel like he completes our family and brings so much goodness, joy and light to our lives. We can’t imagine Casper not being here.”

Written by Elaine Yong

Donovan's Story

Images Captured by Asher Images

Meet Tiny Light Donovan. He loves shaking his maracas and enjoys spending time in his therapy pool. His brother and sister talk to him, read to him, and play with him every day. He can’t communicate verbally, but expresses himself by clapping and humming.
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it.  Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”

Story by Emily Harrison

Jonathon's Story

Images captured by Baotran Pham Photography

Born in May of this year, Tiny Light Jonathon has already amazed his family with his strength. Jonathon “talks” up a storm and smiles at everyone he sees. This sweet little boy also loves to cuddle and listen to his father read him stories.

Jonathon was born prematurely at 31 weeks and spent the first part of his life in the hospital with a CPAP machine to help him breathe and a NG tube for feeding. The hardest part for his parents was leaving him in the hospital when they went home. Even though they knew there wasn’t much they could do for him, they felt as if they were abandoning him each time they left.

Jonathon failed his car seat test in June and the day he was supposed to retake the test, a nurse found an inguinal hernia. He passed the car seat test but was kept in the hospital until he could receive surgery. It turned out he had two hernias, which were quickly repaired, and Jonathon finally arrived home on July 5^th.

This little guy has grown very quickly! At his seven month check up, the pediatrician said that Jonathon could be measured based on his birth date, rather than on his due date. This was a surprise, as most premature babies are measured based on their adjusted age until their second birthday. Jonathon is now at the 50^th percentile for height and weight when compared to other babies born full term on the same day he was. He is eating baby food and is almost able to sit up on his own. At this point, he does not seem to be delayed in any areas. His parents feel very blessed to have brought this little miracle into the world.

Story by Emily Harrison 

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