Isabelle's Story

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Images Captured By Meanie Keenan Photography
www.melaniekeenanphotography.ca


Isabelle is better known by Belle, and she is like any other child.  Her future is wide open and filled with possibility.  She is interested in singing, spending time with her grandparents, swimming, watching movies, time to herself and is becoming quite skilled with a digital camera. 
 
Belle was born in 2001 and diagnosed officially with Down Syndrome on the morning of her birth.  Initially, her family was scared as all they knew of it was that there was potential for a short life span.  Since then, they have learned a lot about the disorder and feel fortunate that Belle does not have any of the typical health issues often associated with Down Syndrome.  Her family works hard to ensure that Belle is given the opportunities she seeks and they focus on inclusion.  Although it has not always been easy, her parents have educated many of her teachers and peers as to what she is capable of.  They are fighting for change, as they often feel that society can be misguided and unwilling to make adjustments to their views on disabilities. 
 
Her parents advise other families to take things one day at a time, to set goals for your children, and to works towards them together.  Their motto, since the beginning, has been to raise Belle no differently than they would any other child.  While they are afraid that someone may take advantage of her, they are equally confident that they will teach her the difference between right and wrong, hopefully avoiding such a situation.  
 
Belle has and continues to educate everyone around her – she brings out the best in people!   Her family truly believes that she was given specifically to them and they will make certain that she lives a happy, full life filled with joy and love.

Liam's Story

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Images Captured by Kalago Photography
www.kalagophotography.com

Tiny Light Liam is one determined little guy. He loves being outside, running and climbing, but cuddling with mom tops the list.

At five weeks old, Liam was diagnosed with tuberous sclerosis, a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs. Liam was born with four tubers on his brain and one on his heart. This caused multiple seizures – between 20 and 80 every day – until he underwent brain surgery at two years of age. Since then, Liam has been seizure-free. Just recently, the family was told the tuber on his heart is gone now too!

Now four years old, Liam has other physical and mental delays as a result of his disease. He has also been diagnosed with autism. The journey has been tough for mom Camilla. “You feel scared, helpless, sad…it’s a rollercoaster of emotions.” But she finds plenty of inspiration in her beautiful Tiny Light.

Written by Elaine Yong

Luke's Story

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Images Captured By Phorever Photography
www.phoreverphotography.ca

Tiny Light Luke may not be able to speak, but he knows how to make his voice and opinion heard.  There’s the “Hmm hmm” with the same tone and pitch as we would say “Thank you.”  And this five-year-old has beaten the odds to say the most important word – “Mum.”

Luke’s parents, Rachel and Nick, knew there was something different with their baby boy when he was first born.  Though he was not premature, he weighed only 3lbs 7oz.  It took months for genetic testing to be complete, and when the family got the news, it was devastating.  Luke has an extremely rare chromosome disorder called mosaic trisomy 22.  This means he has an extra chromosome 22 on some cells of his body.  Children like Luke are often small in size, have heart issues and are severely delayed.

It is now a “wait and see” approach for this family.  Luke faces at least two surgeries in the near future – he needs a feeding tube to hopefully alleviate eating issues and he awaits surgery for his tethered spinal cord.  Luke also struggles with psychological issues and needs medication to sleep.

But there is a lot of hope for this Tiny Light.  He is doing well at his special school with caring teachers who have helped him learn to trust.  Luke loves watching Barney and Pocoyo, but his favourite TV time is enjoying Star Wars with his best buddy, Daddy.  He also likes showing his muscles and going for walks.  “Keep up the fight, don’t forget to breathe, and always believe in your child’s potential.”

Written by Elaine Yong


Jaymee & Autumn's Story

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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

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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

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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

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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



Andrew & Matthew's Story

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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

Brooke's Story

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Images Captured by Matt Brennan
www.matt-brennan.com


Meet Tiny Light Brooke. She is a creative young girl who enjoys singing, dancing, drawing and reading. She also has an amazing spirit, which is demonstrated through her cheerleading.


At age six, Brooke was diagnosed with Childhood Epilepsy. Her disorder is characterized by absence seizures; seizures that cannot be seen, but are frequent. Her future with the disorder is uncertain as medical professionals do not know whether or not she will grow out of it. One of the most difficult things her family has had to accept is that the disorder is out of their control. To cope with this, they have learned to stay positive and fuel their energy and love towards Brooke.


Brooke’s parents hope that their Tiny Light will have “...her own dreams, no matter how big or small they are.” Every day they encourage her to be strong, smart and brave. Their dream is that her disorder “...never holds her back from living her life the way she wants to.”


Brooke’s disorder has brought her family a lot closer and allows them to see how much they are all loved by one another. Her parents admit that “not all of [their] days are good,” and that they “...will never be able to forget Brooke has this disorder.” Their focus remains on the positive things, and they remind other parents dealing with similar diagnoses that “...it is okay to have an off day; it is okay to feel sad, just as long as it isn’t all the time!”

Kayla's Story

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Images Capture by Matt Brennan Photography

Don’t underestimate this Tiny Light. Kayla can read, spell and do math the same as any of her Grade 4 classmates.  Her parents describe her as a bright, intelligent child trapped in a body that doesn’t function normally.


By the time Kayla turned 1, mom Christinea and dad Christopher knew something was wrong. But it took a year and a half of countless medical visits and tests before their daughter was diagnosed with Rett Syndrome. It’s a disorder of the nervous system, affecting almost exclusively girls, that leads to developmental reversals, especially in the areas of language and hand use.


It was the most heart breaking news for the family. “We decided that night that she was Kayla and we would not love her any differently.” The path has not been easy, especially because this beautiful girl’s future is unknown. While many children with Rett Syndrome have a normal life span, it is degenerative and they can lose the ability to walk, touch, hold something or swallow.


Now 9 years old, Kayla is one determined girl. She always manages to find a way to get what she needs and wants. She loves to swim, dance and socialize. She enjoys watching movies and playing baseball too. This Tiny Light is an inspiration to her mom, dad and big brother Riley, “We want Kayla to be happy, to love and feel acceptance. She is our silent angel.”


Written by Elaine Yong