Jared's Story

Images Captured by Jennifer Pearson Photography

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

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

Christian's Story

Images Captured by Misty Dawson Photography

Tiny Light Christian always has a smile on his face, despite the struggles he faces every day. He is a “low-key kind of guy” who enjoys spending his time in quiet and peaceful environments. He is very affectionate and loves when his mother runs her fingers through his hair as he falls asleep. He also loves relaxing in the pool and being in his Snoezelen room (a controlled multisensory environment). 

After a healthy pregnancy, Christian’s mother had complications during her delivery. Due to a lack of oxygen to his brain, Christian was born with cerebral palsy with spastic quadriplegia and global development delay. He also lives with a severe seizure disorder, scoliosis, and cortical blindness. Christian requires a feeding tube and reacts poorly to too much stimulation, noise, and even the weather. He requires constant care and supervision and needs someone to provide suctioning so he does not choke.  Because of this, it is challenging for him to leave the house with his family.

Last year marked a milestone for Christian, as he exceeded the life expectancy his doctors predicted. His health continues to deteriorate but his family cherishes every moment they have with him. Christian has had an incredible impact on his family and those around him. “He has brought a whole new meaning to life and has led us down a path we wouldn't have known if not for him.”

Story by Emily Harrison

Sam's Story

Images Captured by Anastasia Photography

Meet Tiny Light Sam. This happy little guy loves snuggling with his mom, playing with his dad, and watching his sister be silly.Though he has had more happen to him in the first year of his life than most people go through in a lifetime, he greets every day with a smile.
Sam was born at 27 weeks and 5 days, on his father’s 40th birthday. He weighed only 698 grams and spent 110 days in the NICU, requiring respiratory support nearly the whole time and undergoing numerous procedures including blood transfusions, x-rays, heel pokes, and drug treatments. Through all this, his parents remained optimistic, hoping to send positive energy to their son.
Today, Sam weighs over 14 pounds and is nearly meeting all developmental milestones. He may face motor and cognitive delays and his immune system and lungs are compromised, but he gets stronger every day. Sam’s mother encourages families to reach out to each other while in the NICU. This helped her stay strong and also resulted in making new friends who understand the struggles of raising a child born prematurely.

His parents are concerned about what challenges may lay ahead, but know that their son is strong. “I worry that the possible developmental delays he may experience would mean that he has to work harder than some but I know already that he is one tough cookie!”

Story by Emily Harrison

Madden's Story

Images captured by Devon Hall Photography

This Tiny Light is a flirt who can charm anyone he meets.  Madden is only two, yet people are drawn to him and find inspiration in his story. 

Born premature, Madden has an adrenal syndrome.  This means he doesn’t make enough of certain hormones and will require hormone replacement therapy when he is older.  He also has interstitial lung disease, which is very rare in children and causes scarring of the lungs.  All this has resulted in failure to thrive.  Madden doesn’t gain weight or grow like other children his age. 

None of this has slowed Madden down.  He has so much energy, especially for his favourite activities: dancing, swimming and soccer. 

Madden faces a lifetime of doctors’ appointments, procedures and medications.  But his mom hopes her Tiny Light knows no limits, no doors will be closed, no opportunities missed, no passion undiscovered.  “It seems like Madden has been my child forever.  I have a hard time remembering a life without him – he did that to me, captured my heart and soul and I wouldn’t change a thing.” 

Written by Elaine Yong

Madison's Story

Images Captured by D4 Photography

Meet Tiny Light Madison, a two year old girl with an inspiring smile and a love for singing and dancing.  She loves to spend her time playing with her pet bunny, learning new words, reading with Mommy and Daddy and playing at the park. 
At only nine days of age, Madison was diagnosed with Congenital Adrenal Hyperplasia (also known as CAH or 21-Hydroxylase Deficiency).  People with CAH are missing an enzyme the adrenal glands use to make cortisol and aldosterone.  Both of these hormones are very important for survival. Cortisol is produced in times of stress; without it, people go into shock very easily.  This is referred to as an Adrenal Crisis.  This condition can be managed but becomes a problem in times of sickness and injury because our bodies would normally produce extra amounts of these hormones. 
Madison’s parents were terrified upon hearing the diagnosis.  They had never heard of CAH, and it all seemed so overwhelming.  “The thought of having to keep up with these medications and not messing them up was so scary. We were scared to tell anybody, we thought nobody would understand.  We were also scared about our daughter's future.”  However, Madison has responded very well to her daily treatments and is thriving.  But as the parents explain, “the hardest part has been the constant fear of Madison getting sick or hurt and having an Adrenal Crisis.  Although she has not had one yet, it is inevitable that one day she will and we always need to be prepared for it.”
The future looks bright for this Tiny Light, as she should be able to lead a healthy, happy life with the help of medication and careful treatment of illness and injury.  As long as she is careful, Madison will be able to accomplish whatever she puts her mind to.  Her parents dream of Madison growing into a very happy, well-rounded person, who goes for what she wants in life.

Story written by Amber Grant

Maxxwell's Story

Images Captured by Jenn Di Spirito Photography

 Tiny Light Maxxwell is definitely a charmer. He knows he’s cute and loves getting attention. If this toddler blows you a kiss, that means he really likes you.

Maxx was diagnosed in utero at 18 weeks with heart defects - atrioventricular septal defect  (large hole between the ventricles and atria) and ventricular septal defect, plus a Mitral Valve leak. Then doctors told his parents Cheryl and Tom the amniocentesis confirmed Down syndrome.

Within the first six months of his life, Maxx had three heart surgeries. He finally got to go home from the hospital at 6 months, the day before Father’s Day. Maxx may require more surgery in the future and his parents aren’t sure how Down syndrome will affect his life long-term. They are finding support in the community through various organizations such as the Langley Down Syndrome Resource Group.

Maxx will be 3 years old in January and he is pretty much like any other toddler. He loves music and he even knows how to sign for his favourite things. When he wakes up and goes to sleep, he’s always asking for cookies and milk. “We hope Maxx is accepted for who he is and we hope there will always be someone around who can love, support and take care of him.”

(The Langley Down Syndrome Resource Group meets 7:15pm the last Monday of every month except July, August and December at Christian Life Assembly on 56th Avenue in Langley.)

Story Written by Elaine Yong

Giana's Story

Images Captured by Dawnette Walters Photography

When Tiny Light Giana smiles it lights up the whole world. For parents Michael and Shelley, that ray of sunshine is reason enough to get up each and every day. 

Giana was nearly six weeks old when her mom and dad found out she had several serious medical issues. She was diagnosed with isolated lissencephaly (Type 1), also known as “smooth brain”. It’s a rare disorder resulting in a lack of development of brain folds and grooves. This means Giana will only function at the level of a five month old baby. She also has microcephaly, or “small brain”, so her head is much smaller than the average three year old. Giana needs to be on a ventilator to assist with breathing and she is on a number of medications for a seizure disorder.

At first, her parents were devastated and angry. Then one morning, they woke up and realized Giana is the most precious gift they could have ever received. “Giana is our light, our world. We cherish every moment we have with her.”

Though her activities are limited, Giana loves getting attention. She enjoys bath time and music. But if she is annoyed at her twin brother Dominic, she doesn’t hesitate to let him know by rolling her eyes.
Doctors aren’t sure what is in Giana’s future. The family is taking it one day at a time and already, this beautiful Tiny Light has surpassed the odds. “Live life to its fullest. Realize that you have to live every day like it’s your last.”

Written by Elaine Yong

Kensey's Story

Images Captured by Kate Mahaits Photography

Tiny Light Kensey has gone through a lot in her first year of life.  She was born three months premature, which meant numerous blood transfusions, antibiotics and a ventilator for two months.  This determined fighter also underwent heart surgery and required a chest tube.

It was difficult for the family to be away from home for so long while their baby girl was in hospital, but the day Kensey came home was very special. Now, this happy little girl gets lots of cuddle time with mom and dad.  She loves being outside and going for car and boat rides.  It’s easy to get giggles out of Kensey with her ticklish legs.

Parents Colette and Scott have advice for other families going through difficult medical journeys, “Stay positive and make friends with other parents who have gone through similar circumstances.”

This Tiny Light has a bright future ahead and should require only minimal assistance with occupational therapy and physiotherapy.  “We love Kensey very much and look forward to many happy years and memories together.”

Story written by Elaine Yong

Tiny Light Alex

Images Captured By Lifestreet Photography

Tiny Light Alex is happiest when he is surrounded by people, whether at school or at home. Though he can’t talk, he can certainly communicate with smiles, laughter and lots of hugs.

Alex was diagnosed at one month of age with a rare genetic disorder called “mosaic ring chromosome 22q13 deletion”. This means he is missing part of his genetic material, causing both mental and physical development delays. Parents Sharon and Gerhard were stunned, and the news has been especially difficult for Alex’s older sister and brother Stephanie and Marcus to understand.

The tough journey has also brought so much joy to this family. 6-year old Alex loves wrestling with his dad and siblings. He could spend all day at the playground going down the slide and he is learning soccer moves from his brother. His new favourite toy is a special tricycle built by dad. Alex can say “mama” and “dada”, which is beautiful to hear.

Now, it’s impossible to imagine life without this Tiny Light. “Alex is exactly the way we are supposed to be. He does not care if you jump ahead of him in the lineup. You can be angry with him and the first thing he will want is a hug. Imagine this world if we could be even slightly like that. It would be like heaven wouldn’t it?”

Story By Elaine Yong