Sam's Story

Images captured Susan Carmondy Photography

http://www.susancarmody.com/

Tiny Light Sam is one determined little guy. He has to work hard for everything because he has delayed motor development, but he is motivated and full of joy. At nearly three years of age, this smiling toddler is full of kisses and waves. His amazing spirit shines through.

Parents Amanda and John knew their youngest son was not reaching his milestones, but they never imagined he would be diagnosed with a neurological disorder. Until recently, doctors were not sure what Sam had, but now it has been determined to be Glut1 deficiency syndrome. This is an extremely rare genetic condition that impairs brain metabolism, potentially causing a wide range of symptoms including development delays, speech difficulties and muscle twitches.

Sam is on a special ketogenic diet that is used to treat Glut1 patients and it is working well. He has been free of seizures and is now completely off anticonvulsant medication.  While he isn’t talking yet, he is getting more mobile as he learns to creep along furniture.

The future for this Tiny Light is uncertain, but his family has learned to live in the moment. Big brother Charlie is Sam’s biggest champion, and the boys love spending time together. “Sam has helped us to slow down. He takes his time to reach each milestone and we celebrate all of his gains.”

Written by Elaine Yong

Nickolas' Story

Images captured by Studio 1079  

www.studio1079.com

Tiny Light Nickolas may spend as much of his day as he can playing sports – he especially loves running and lacrosse – but he always has time for hugs and kisses. This happy 6-year-old also has a creative side. He is a keen storyteller and has even made his own comic book.

Nikolas has ADHD and a neurological disorder known as sensory integration dysfunction (SID) or sensory processing disorder (SPD). This means he has difficulty taking in, processing and responding to sensory information about the environment and from within his own body. The result can be unusual ways of responding or behaving. For example, in the classroom, students with SID might act impulsive, resist group activities, fidget in the seat, or appear inflexible and stubborn.

Unfortunately, SID is not a recognized diagnosis. This has been challenging for Nickolas and his parents, Duane and Jacquie. “School has been very difficult. Most educators have never heard of SPD/SID, or if they have they have no understanding of all the elements involved and how truly difficult day to day life is for our son.”

The family takes it one day at a time. Nickolas is now on medication, and that is helping him focus better in school. This Tiny Light’s incredible resilience amazes his parents every day. “We tell him each and every day, at every opportunity, how much he is loved and that he can do anything he wants to in life.”

Written by Elaine Yong

Jaymee & Autumn's Story

Images Captured by Craig D. Phootography

www.craigdphotography.com

Tiny Lights Jaymee and Autumn are twins who share one important personality trait —they are fearless.  While Jaymee is easygoing and happy with herself, Autumn is independent and strong.

When the girls were born, parents Heather and Ed were told something was wrong with the size of their heads. Further testing confirmed a diagnosis of lissencephaly with secondary microcephaly. Lissencephaly literally means “smooth brain”—a  rare brain formation disorder which results in a lack of development of brain folds and grooves. Microcephaly is an abnormally small head. The long-term prognosis was not encouraging, but Jaymee and Autumn have grown and developed at their own pace.

These Tiny Lights love bowling, swimming and riding their bikes. Spending time playing with their brother and sister also top the list for Jaymee and Autumn. The road has been difficult but the family feels blessed. “We try to go day by day, even year by year. I hope they learn as much as they are able to and just are happy and healthy.”

Story Written By Elaine Yong

Jacob's Story

Images Captured by Sourpuss SMILES Photography

 www.sourpusssmiles.ca

Meet Tiny Light Jacob.  He loves baths and walks, but one of his most favourite pastimes, by far, is hanging out with his big brother Jackson.  Playing with toys and reading books are just a couple of the interests the pair share.
Jacob was born with Tricuspid Atresia and Hypoplastic Right Heart Syndrome (HRHS).  HRHS is a congenital heart defect in which the right ventricle of the heart fails to grow and develop properly.  As a result of the syndrome, blood flow is insufficient and infants often appear to be what is called “cyanotic” – or blue.  Jacob has undergone three heart surgeries, and will require at least one more when he is around two years of age.
Jacob’s parents hope that their Tiny Light will “... continue to smile and laugh ... [and] ... that he is able to grow old.”  They are in awe of his ability to take and appreciate each moment at a time.  His smile and laughter never falters despite being surrounded by nurses and doctors at times.  As a message to others, Jacob’s parents say, “Enjoy each moment you have with your child, as you don’t know what the next will hold.”
After only recently undergoing his third heart surgery, Jacob is doing exceptionally well.  He is still on oxygen, but he is at home with his family instead of in the hospital.  His parents expect that he will be off the oxygen soon and that he will be ready for his next surgery – with smiles, laughs and his unwavering determination.

Story written by Stephanie Bond

Bronson's Story

Images Captured by Misty Dawson Photography

www.mistydawson.com

Meet Tiny Light Bronson.  At just five days old, this tiny light began chemotherapy treatments after being diagnosed with Stage 4S Bilateral Adrenal Neuroblastoma with metastases to the liver.  This type of cancer is so rare that to date, there have only been 45 cases recorded in the world.
When Bronson was seventeen days old, his doctors suggested radiation therapy in order to accelerate the treatment process.  After three days of low dose radiation, Bronson started to demonstrate signs of drastic improvement, but his liver did not recover the way his doctors had hoped and the only treatment option was a liver transplant.  Fortunately, Bronson’s Auntie Sarah Beth was a match and they both underwent a successful liver transplant surgery when he was two-and-a-half months old.
As of today, Bronson is a happy and healthy nine-month-old little boy who loves to crawl around and get into anything and everything he can.  He has proven that he is a fighter, and continues to inspire his family and others with his brave journey.  His parents have received letters from people all over the world offering their support, claiming they have been changed and inspired from Bronson’s story.  His parents consider this to be “... very humbling …” and reflect that their son’s perseverance has taught them that “… even when things are looking grim, there is always hope ... take time to love your family more, and continue to thank God for the gift He has given you.”

Story by Stephanie Bond

Ryan's Story

Images Captured by Matt Brennan Photography

www.matt-brennan.com

To view the world from Ryan’s eyes is to look at it with compassion, understanding, and love. This Tiny Light never fails to notice the beauty that surrounds him, taking in the sunsets and sunrises. He is quick to forgive and exudes strength and resilience. Instead of shying away from obstacles, Ryan faces challenges head on. Sports and games top the list for this active 12-year old, especially basketball, road hockey and soccer. Indoors he enjoys board games and video games, but he is also a master sous chef, assisting his mom with meals. 

Ryan was born with a duplicated right kidney and an ureterocell (when the ureter does not implant into the bladder properly and fills with fluid inside the bladder.) When he was just one month old, he underwent surgery to rectify it. After several years of regular visits to BC Children’s Hospital, Ryan’s condition suddenly went downhill. He was rushed to hospital with a severe kidney and bladder infection. Ryan has now had another four procedures, including the removal of half his right kidney. His bladder has become hostile and is creating excessive pressure, resulting in hydronephrosis in both kidneys. “This will eventually lead to kidney failure but miracles happened every day and that is what we hold out for: every good day.” 

Ryan’s journey has been one of hope and courage. While the family faced many hardships in the hospital they did not let it consume them. They looked for the laughter in life amidst the turmoil. “You have absolutely no control over what is happening to your child. There is no way you can take away the pain that they are in.” But they take it day by day; moment by moment. 

This Tiny Light’s mom dreams that “he lives his life as full as is possible.” When she feels less hopeful she thinks of her niece Grace, who has had a kidney transplant, and she is reminded that miracles are possible. 

written by Tara Anderson

Owen's Story

Images Captured By Vanessa Balenovich Photography

Meet Tiny Light Owen. He loves learning new things in school – especially numbers and the ABC’s. He also enjoys being outdoors either playing soccer or just sitting and watching for airplanes to fly by in the sky.


At age two, Owen’s parents had noticed that he was not developing at the same rate as other children his age. that he had great difficulty when communicating, and that he had severe sensory issues. After a consultation with a medical professional, he was diagnosed as Non-Verbal with Moderate to Severe Autism. According to his parents, Owen “...could not communicate [and] he had no pretend play skills.”


Owen has to work extra hard to accomplish simple tasks that come naturally to other children. The determination and progress that he has demonstrated, particularly with his verbal communication skills, inspires his parents every day. As they say, “He has opened up a whole world for our family, we don’t just get through the day, we embrace the day. He inspires [us] every day to be the best [parent], person and advocate for Autism that [we] can be.”


As a message to others, Owen’s parents say that “this road with children with Autism is a hard one, it is a road less travelled for most ... always be optimistic.”


Story by Stephanie Bond

Andrew & Matthew's Story

Images Captured by Anna Jones Photography

www.annajones.ca

These Tiny Light twins may face challenges, but they never complain and wish their lives were any different.  Andrew has atypical autism and moderate/severe spastic cerebral palsy, requiring a wheelchair for most of his day-to-day activities.  Matthew has ADD and mild cerebral palsy, which affects his motor skills.

Their parents knew the twins would have some form of disability before they were born.  Andrew was officially diagnosed at 6 months, Matthew at 3 years of age.  “We were in one way thrilled the twins had survived to delivery and made it home from the NICU, but we knew that life would be challenging as the parents of twins – and twins with special needs.”

The 12-year old brothers are great working together, but they have very different aspirations.  Andrew wants to be a DJ.  Matthew dreams of being a pilot.

This family has faced many ups and downs, yet there is so much to look forward to with these Tiny Lights.  “The slower pace does allow you to truly enjoy the moment that might otherwise pass you by.”

Written by Elaine Yong

Jake's Story

Images Captured by Naturally Beautiful Photography
www.naturallybeautifulphotography.com

Tiny Light Jake is always on the go, jumping on his trampoline and playing outside. This energetic boy is always smiling and enjoys playing with his cousins and friends. His favourite things include cars, trucks, trains, and animals.

In his first month, Jake had a large appetite, but was losing weight. His parents were concerned and took him to his family doctor, who quickly sent Jake to the hospital for testing. It was exactly one month after he was born that Jake was diagnosed with cystic fibrosis. His parents were shocked; they knew little about his condition and what it would mean for their son.

In the first year of his life, Jake was hospitalized three times. Now, he requires daily breathing treatments and many medications and supplements. Despite all this, he never complains. His parents are amazed at how well Jake has adapted to his treatment and how nothing seems to bother him. “Jake is so full of life. Everything about him inspires us. He’s a strong boy – a fighter! He has a great future ahead of him and he'll be able to accomplish anything he wants to in his life.”

Story by Emily Harrison

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