Benjamin's Story

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Images Captured by Melissa DePape Phoography
www.melissadepape.com

Benjamin is a three year old boy who continues to defy all odds against him and light up the lives of everyone who meets him. He challenges family, friends and others who come into contact with him to look at disability through his eyes and see just how "normal" someone with a disability truly can be.
 
At sixteen months of age, Ben was in the Stollery Children's Hospital getting an NG tube put in to address his nutritional concerns; his neurologist heard we were there and came to visit. She broke the news that changed our lives forever. Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3 (PCH3). What this meant for Ben was a low life expectancy of eighteen months and not much hope for development. We were devastated and immediately took to the internet to "Google it" against the advice of our doctors. Ben is one of only five individuals (four living) to be officially diagnosed with PCH3. He is our little anomaly.
 
Now, at three and a half, Ben is thriving and generally healthy. He experiences global delay in most areas but is determined to overcome his own barriers. He is able to communicate using sounds, cries and the occasional word - most often calling for Dad. While he has extreme challenges, he is a willing participant in his day program and loves the time he spends with his Developmental Specialist provided by the GRIT program. The biggest obstacle and fear for us as his parents has been ensuring and feeling confident in the decisions we make for his future. Our goal is to determine what is best for him based on his reaction and comfort level in a given situation (and desperately hope we are able to read his signals accurately). We choose not to focus on his life expectancy and what he cannot do, instead living each day just as any other family would. We choose not to plan our lives around Benjamin but instead choose to plan ahead for him so he can be included the same way as his siblings.
 
Whether it is rough housing, watching Waybuloo over and over or spending time with his grandparents, each day with Ben is a great one. Both his sisters adore him and he brightens the lives of our family and friends with his infectious giggle and twinkling eyes. We feel very fortunate to have Benjamin as our son.


Story Written by Benjamin's mother Kristi Hall-Busque

Lindsay's Story

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Images Captured by Sprout Photography 

Tiny Light Lindsay loves life. She meets all her challenges with resilience and strength. Her mom Naomi says, “She lives in the present and has no fear.” The things in life that bring Lindsay the most joy are amusement parks, Chucky Cheese and balloons.
Throughout the pregnancy, there were indications something was not right, but doctors dismissed them as nothing important. The prognosis following Lindsay’s birth left her family reeling. For the first years of her life, they were in survival mode, doing everything in their power to ensure their little daughter lived.
Lindsay has an undiagnosed genetic disorder that affects multiple areas of her body. She is considered palliative, which means doctors treat the symptoms and reduce her pain without eliminating the cause. Lindsay is hearing and visually impaired, and suffers from seizure and bowel disorders. On top of that, this young survivor battled kidney cancer at the age of 2, losing a kidney in the process. Lindsay has spent her life in and out of hospital.
For other parents who are facing the same challenges, the family offers these words of advice: “Don’t feel guilty for getting help to take care of your child, and make sure you remember to take care of yourself.” While they do not know what the future has in store for them, they are praying for one that is “pain and illness free.”  All they know for sure is that, with Lindsay, it will be filled with love and joy.
 
Story Written by Tara Anderson

Caleb's Story

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Images Captured by Petra King Photography
www.petrakingphotography.com

This is Tiny Light Caleb. Although he and little sister Hannah are eleven months apart, they are best friends and are often mistaken for twins. Full of energy, Caleb keeps his parents Sharon and Derrick on their toes.

During mom's eighteen week routine ultrasound, the technician discovered some “red flags and indicators” that suggested the baby may have Down syndrome as well as other medical issues.  A follow-up specialized ultrasound was booked and the realization of the news starting sinking in.  The entire family spent much time praying for a miracle. Their prayers were not in vain; the doctor reported the initial worries about small holes in their baby’s head and heart were amiss and he stated he had never seen a healthier heart.

In January of 2010, the family gave birth to their second daughter, Grace.  Sadly, she was born very sick and was taken off life support only thirty-one short days later.  During that time, Grace taught the family more than a lifetime of books or schooling ever could.

Now at the age of four, Caleb is one of the greatest joys in his family and friends' lives.  The also celebrated a new addition to their family when Zachary was born in October.  While it took a long time for the family to accept Caleb’s diagnosis - out of worry for the struggles he may face - their Tiny Light has taught them so much, "God is revealing to us everyday the joy and love Caleb has to offer. He has truly demonstrated what love, mercy and grace are really all about."



Story Written by Kristi Hall-Busque

Gregor's Story

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Images Captured by Rhonda DeMone Photography
www.rdphoto.ca


Meet Tiny Light Gregor. Now that he is able to sit independently, there is no stopping him as he scoots around on the floor. He sure is curious and is always testing to see if you’re watching because he loves to get into everything! A few of this toddler's favourite things to play with are the cupboards, toilets and the dog’s dish. If Gregor was in charge of planning his day it would include: swimming, playing ball, reading books, music, dancing, and of course playing with his big sister Brynn. These two share a very special bond.

Gregor has Down syndrome. When he was born, he had to be resuscitated. His heart had a small hole and he had pulmonary hypertension. His patent ductus arteriosus, a blood vessel that is supposed to close over soon after birth, didn't close. Thankfully, all those issues have resolved over time but Gregor's medical problems did not end there. At 9 months, he became one of the youngest patients ever to be diagnosed with juvenile diabetes. He spent the next few months in and out of the hospital, battling various infections. Just before his first birthday, Gregor went into kidney failure from interstitial tubular nephritis. On top of all that, this brave boy was diagnosed with high-risk acute lymphoblastic leukemia in October 2010. After a year of chemotherapy treatments, Gregor is in remission. Now the three year old is not only surviving, but thriving.

The medical journey has been challenging for the family. Children with Down syndrome are at greater risk of heart complications, especially frightening for parents Duncan and Melanie. Their first son Bergen passed away from a very rare congenital heart disease when he was just eight months old. With Gregor, diabetes means a complicated daily routine of testing glucose and administering insulin. Plus, there are still two and a half years of chemotherapy ahead.

But Gregor is not only surviving, he is thriving. This amazing little man redefines what it means to be a hero. He was the honored hero for the Leukemia Lymphoma Society’s Team in Training campaign for 2011. Gregor has a love for life. He is strong and cheerful, his lips always curled into a smile. Sit with this Tiny Light and be prepared to cuddle! “When he rests his head on your shoulders he reaches up and plays with your hair. He is so full of love for everyone.” 

written by Tara Anderson

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!”

William's Story

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Images Captured By Christy Wells Photography
www.christywellsphotography.com


Meet Tiny Light Will – his mom believes that Will can see angels.

William was born a typical, healthy little boy but suffered from a Meningitis infection at only three days old which caused a great deal of damage to his brain.  His official diagnosis is Cerebral Palsy stemming from a brain injury; he also experiences bilateral hearing loss.  When he was just five days old, the doctors informed them of just how bad the damage was and warned them that Will would likely not make it much longer.  They were devastated.

But being the fighter he is, Will has overcome all odds set against him; he is a gift to his family and friends.  There are always fears that he will not be treated well or with the respect he deserves, but his family works hard at ensuring that only the best people are around him.  Will is out in the community every day, and they realize that they cannot control  what others think or do; they can only hope to help teach those who are willing to listen.

Will is technically on “palliative care,” but his mom jokes, “aren’t we all?”  He lights up the world around him by simply existing.  This four-year-old loves music and dancing, playing in water and watching his peers play around him.  He currently participates in a day program called G.R.I.T (Getting Ready for Inclusion Today) that assists him accomplishing specific personal goals.

His family wishes for him to be the best Will he can be and that his life is filled with support, happiness and joy.  They are excited to share pictures of Will so others can witness how brightly he shines.

Addison's Story

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Images Captured By brand One Studios
 www.brand1studios.com


 Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.

Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."

Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!

An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."

"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Story by Angela Stephen-Dewhurst

Ola's Story

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Images Captured By Jag Nagra
www.turntopage84.com



Sing for Ola and she will likely show you her “bum wiggle” dance.  She loves to clap, smile, and play with her Basset hound, Basil.

Ola’s family members were unaware, when going into the delivery room, that their daughter would have Down Syndrome, but the moment Mom held her, she knew there was something different about her daughter.  She was immediately drawn to her.  It was only an hour later that the news was broken to them.  

Ola has been fortunate not experience other complications along with her diagnosis.
The hardest part for the family was the fear of telling those closest to them and worrying about their reactions; it was a relief when their families did not react negatively.  Looking ahead to Ola’s future, they worry about how she will be accepted and received by her peers.  Mom hopes that by advocating on Ola’s behalf, she can help parents understand that their children have more in common than they have differences.  They try to be as open and as approachable as possible when it comes to discussing Down Syndrome.  If one thing they say makes a single family feel better about their own child’s diagnosis then they have accomplished what they have set out to do.

Ola has taught her family how to take life a little slower and how to appreciate the small things.  Watching Ola develop and learn new tasks has been exciting for the entire family, including older sister Poppy.  Together they cherish each new accomplishment.

Their goal is to raise both daughters the same way and to put all they can into them.  Mom is sure that her Tiny Light, Ola, will be an inspiration to many.

Orin's Story

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Images Captured by Deanna Nilson Photography

 
You would never guess this cheerful and chubby Tiny Light has already undergone two open heart surgeries with another one still to come.  11-month old Orin loves to talk, bounce in his jolly jumper and watch his big brothers play.

Orin’s parents Julie and Steven found out halfway through the pregnancy their baby boy had a serious heart defect – hypoplastic left heart syndrome, or HLHS.  This means the left side of his heart didn’t develop properly and Orin is missing his left ventricle entirely.  He had his first surgery less than two days after he was born.

It was heart breaking for his family to watch Orin go through the ordeal without even being able to cuddle him.  But they found strength through their faith.  “The most amazing thing is the joy and peace in our family through everything.  Orin doesn’t look like a heart baby.”

Aside from one more open heart surgery in the future, this Tiny Light is expected to live a long and healthy life.  “We have the same fears all parents have when dealing with a threat to their child’s life.  But we have peace from God, a strong loving family, and a strong little boy.”


Written by Elaine Yong

Kylie's Story

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Images Captured by Aspectus Photography

Tiny light Kylie is so good at making friends; she is greeted at school every morning with a row of classmates waiting to give her hugs.  This beautiful five-year-old girl has brought her parents so much joy, though the road has been challenging. 

Trevor and Michelle did not get a proper diagnosis for their daughter’s condition until she was almost a year old.  When doctors told them Kylie had Joubert syndrome, they were devastated.  It is a rare genetic disorder caused by the absence or underdevelopment of the cerebellar vermis, an area of the brain that controls balance and coordination.  Effects vary amongst children but include decreased muscle tone, jerky eye movements, difficulties with coordination and cognitive impairment.  “It was particularly hard because the doctors could not tell me if she would walk, talk or if there were cognitive delays.” 

Now Kylie is going to kindergarten and is doing very well.  She can take 22 steps in a row without falling!  She is also learning new verbal words.  This cheerful girl enjoys dancing to music, drawing, laughing and playing pretend games.  Her newest love is her brand new baby sister, Hailey, who was born in December. 

Most importantly, this Tiny Light has taught her family to have patience and never take things for granted.  “Although Kylie’s journey looks nothing like I thought it would, it is more rewarding and beautiful than I could have ever imagined.” 

Written by Elaine Yong