Meet Preston

Images Captured by Anelle Richarson Photography

Meet 4 year old Preston.  Preston loves cooking, movies, and teasing his little brother.  In 2010, Preston was diagnosed with Kleefstra Syndrome.  His mom, Bretny, felt like someone had run over her chest with a truck when she finally received the diagnosis.  Although she was happy to finally have a diagnosis, it was very hard to hear about the challenges Preston would have to face.

 

Kleefstra syndrome affects each patient differently.  Main characteristics include developmental delay, intellectual disability, severely limited or absent speech, and weak muscle tone.  This syndrome has not been acknowledged for long, so what the future holds for Preston is a mystery.

Preston’s Mom is always extremely proud when Preston hits a milestone.  After four years of waiting, she was finally able to hear the words, “I love you, Mommy.”

 

Preston takes great pleasure in the simple things in life.  He is able to pick up any instrument and make it sound like he knows exactly what he is doing.  He has an extraordinary photographic memory, and charms the ladies by always noticing if they are wearing a new shirt, have dyed their hair, or have gotten their nails done.

 

Although you face many challenges when you have a child with special needs, Preston’s mom would not trade him for the world.  He brings great joy to her life, and although Preston’s future remains a mystery, they have learned to live life one day at a time, cross their fingers, and have fun.

Story by Erin Lylyk

T.J's Story

Images Captured by Rhonda DeMone Photography

Meet TJ, a. strong little man who always keeps smiling despite everything that he has endured. When TJ was six months old, his parents knew something was wrong. While he wasn't progressing at all, his doctors tried to reassure them that all babies progress at different rates. But by the time TJ was 18 months old, he was developmentally only 6 months old, and after seeing a neurologist, they determined that he had cerebral palsy and a global delay. 


It was devastating for his parents to never hear their child speak, to never know how he is feeling, and to not hear him say the words "I love you."  And through this, they've learned to not take things for granted. They say that the most amazing thing through this has been seeing how children around him have grown more compassionate and curious to learn about children like TJ, and seeing people fall in love with his infectious laugh and handsome smile. His mom says, "I am inspired by just how strong a person is inside of his little body. Despite all the pain he has endured with multiple surgeries, he just keeps smiling. I swear, he even comes into the recovery room smiling!" 


TJ is very close to his best friend, his Grampie, who is the only person who hears what TJ is saying without even saying a word. They have a special bond that simply cannot be explained. 


His parents constantly worry about TJ and what his future holds, but they know that his brother and sister will advocate for him and love him. They hope that he will grow up being happy, healthy, and being accepted by others. TJ's mom sums up her feelings with this quote she often uses to describe her thoughts, "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
And so far, TJ is proving to be the best teacher. 


Story by Jag Nagra

Ronan's Story

Images by Teagan Photography

Tiny Light Ronan is a pure soul who loves unconditionally.  He is only 7 years old, but already, he has taught his family just how precious life can be. 


Ronan’s mom Natacha says she always knew her son was special and it was almost a relief when doctors diagnosed him with autism at the age of 2.  The family was living in Saskatchewan– the province with the least support for autistic children at that time – and to give Ronan the best chance possible, they made the difficult decision to move. 


It wasn’t easy for Curtis and Natacha to come to terms with Ronan’s diagnosis, but they love him unconditionally.  Dealing with other peoples’ reactions has been challenging.  Ronan roars in church when babies cry.  He screams when he is hungry or tired.  He can only hold conversations with his parents.  But there is so much more to this Tiny Light.  He enjoys riding his bicycle and downhill skiing.  This little monkey can climb anything and has no fear of heights. “Every developmental stage and life milestone is such a labourious process, so when he succeeds and overcomes, it is such an incredible and euphoric experience it is impossible to stay sad.” 


Ronan’s parents dream he will finish high school and dance with a girl during his prom night, all dressed up and looking dashing.  Not too hard to imagine for this Tiny Light! 


Written by Elaine Yong

Madison's Story

Images by Kristy Klaassen Photography

Meet Maddison Morris. She loves to sing, dance and act. Maddison has psoriatic arthritis. Her family started asking questions when they first noticed that she was having trouble putting on her pants and when she began sleeping a lot. Her older brother had similar symptoms before he was diagnosed with arthritis, and her aunt has lupus so Maddison’s mom was worried that she may have lupus. She was seen by the rheumatology department at Children’s Hospital, and was diagnosed with psoriatic arthritis.


Psoriatic arthritis is a systemic rheumatic disease that can cause inflammation in body tissue away from the joints, such as the eyes, heart, lungs and kidneys. Although Maddison does not have psoriasis, she was still diagnosed with this type of arthritis. She faces doctor’s appointments, blood tests and treatments for the rest of her life.


Maddison has to take many medications each day, and she suffers with stiffness for two to three hours every morning. She was very happy to learn that she will still be able to continue her dance classes, but is sad that she will not be able to go to school anymore.


Maddison amazes everyone with her positive attitude, spirit, and her strength and resolve to get better. She loves to write songs and do other people’s makeup.  She is a great helper, and her determination to dance makes her mother’s heart smile.


Story by Erin Lylyk

Kaden's Story

Images by Adelle Munk

The Tiny Light foundation is saddened by the loss of a very special Tiny Light.  His story had not yet been published, but we would like to honour him by sharing his story.

Tiny Light Kaden was a typical teenage boy; he loved video games, his dreams were bigger than life, and he was quite the flirt.  He loved his family deeply with utmost devotion.  He was selfless and gentle, loving and generous.  Kaden was a torch bearer for the 2010 Vancouver Olympics and had received his learner’s permit, both exceptional accomplishments that he was extremely proud of.  However, Kaden’s life was anything but typical; he had been through more in his sixteen years than most people go through in a lifetime. 

Kaden was born at 37 weeks gestation on May 27^th, 1995 at BC Children’s Hospital.  He was diagnosed with Pulmonary Atresia with VSD (a hole between the ventricles), and after multiple surgeries to try to correct his pulmonary blood-flow, he also developed secondary pulmonary hypertension. Mom Jennifer was given the devastating news by the doctors that Kaden was not expected to live beyond infancy. 

Although Kaden exceeded the expectations of his medical team, he had a tough fight.  After three open heart surgeries, many medical procedures at BCCH, and a life rich in love, warmth and kindness, Tiny Light Kaden lost his battle on September 1, 2011 surrounded by his loving family.  Kaden’s poor body just did not allow him to have the long life he and his family so hoped for; he was in the final stages of his heart disease and was battling heart failure and dyspnea when he passed.  Before his passing, his mom said, "My hope and dream for my Tiny Light is that he find peace always, and wherever he plays after he leaves us, that he is able to [continue] his journey … in good company with a great sense of humour.”  Peace is what they dreamt for him ... peace is what he now has.

In the words of Kristin Chenoweth,

“They shine a little brighter, they feel a little more 

They touch your life in ways no one has ever done before 

They love a little stronger, they live to give their best 

They make our lives so blest, so why do they go so soon? 

The ones with souls so beautiful 

I heard someone say-- 

There must be Borrowed Angels, here in this life 

They come along, into this world, and make this world bright 

But they can't stay forever 

Cause they're heaven sent 

And sometimes, heaven needs them back again.”

I feel blessed that I was able to meet this Tiny Light ... this Borrowed Angel.  On behalf of the entire Tiny Light Foundation, our thoughts and prayers are with Kaden’s family.

By Adelle Munk

Jayden's Story

Images Captured by Caity McCulloch Photography

Here is Tiny Light Jayden.  He is the best snuggler ever! Jayden loves playing and listening to music, swinging on his swing-set, building with his blocks and going swimming.  His mom admires his happy, loving personality and is unsure how he manages to keep a smile on his face considering the challenges he has to overcome daily.  Jayden is her inspiration.

Jayden was born on March 31, 2010; his parents already aware that he had Down Syndrome after an ultrasound showed indications of soft markers.  A visit to a specialist and further testing confirmed the diagnosis, so mom did what she could to be prepared and began researching everything possible on the disorder.  When Jayden made his arrival, the family received some great news discovering that he did not have the common heart issues associated with Down Syndrome.

However, four days later, when Jayden still had not had a bowel movement, things took a turn for the worse.  The family was sent to Victoria General Hospital where they remained for three weeks as Jayden had further been diagnosed with Hirschsprung’s Disease.  In Hirschsprung’s Disease, the nerves from part of the bowel are missing which means material cannot be pushed through, resulting in blockage.   In August of 2010, Jayden had surgery removing one a half feet of his colon and since then, has been thriving and doing well but still continues to experience discomfort when he needs to have a bowl movement.

While the hardest thing about their journey has been watching Jayden go through so much pain, the most amazing part is how much his parents have learned about themselves.  They now view children with special needs in an entirely different light and feel their child is no different than any other child.  Jayden has taught them a great deal about life; about being patient and ensuring that you do not lose yourself as a parent a long the way.  When mom is having a rough day, she looks at Jayden’s beautiful blue eyes and big smile, and cannot help but to smile herself.

For the future, his family hope Jayden will find independence, potentially find employment and continue to be as accepted and loved as he is now.

Story by Kristi Hall-Busque

Ryder's Story

Images by Megan Stewart Photography

This Tiny Light is Ryder.  Ryder loves to roll around on the ground, play with his toys, and swim in warm pools.  Ryder also loves to listen to music and watch his favourite cartoons.  Ryder amazes his parents with his determination and ability to never give up.  Ryder has Spastic Diplegia Cerebral Palsy.


Spastic Diplegia is a form Cerebral Palsy that affects the muscles of the lower extremities and is caused by damage to the brain.  Ryder’s brain damage most likely occurred while he was in the womb when he experienced trauma from Twin to Twin Transfusion Syndrome (TTTS).   TTTS occurs when a set of twins share a single placenta and there is an uneven blood flow between the two babies.  One twin receives a lot of blood while the other receives too little.  Left untreated, 70-100% of these babies will succumb to the trauma. Wyatt, Ryder’s twin brother and a Tiny Light with wings, sadly passed away on day 24 of his short life.  Without Wyatt, Ryder would not be here today.


Ryder’s parents hope that he will never lose his determination, and that he will continue to fight and prove people wrong when they say he cannot do something.  They want to tell other parents of children with special needs that it can be hard at times with all the limitations your child has, but you need to focus on what they can do rather than what they cannot.  


Ryder’s parents’ biggest fear is that he will not be able to walk, but they feel in their hearts that he will walk someday.  However, if he does not, it is not the end of the world because he is here, he is happy, and that is all that matters.  It is always heart-warming knowing a child who can bring smiles to the faces of anyone and everyone he meets!


Story by Anna Terebka

Matteo's Story

Images Captured By Tricia Marie Photography

www.TriciaMariePhotography.ca

This bright-eyed little guy is Matteo. He loves to play with his mom and dad. Making them laugh and smile makes him happy. He might travel the world one day, as he loves to go places with his parents already. He, like so many other children, also loves to dance. Matteo is a strong-willed, adventurous little man, who is full of life.

Matteo was diagnosed with dilated kidneys at 38.5 weeks gestation. His parents were overwhelmed and confused, and also felt a bit guilty. They were unsure of what this meant for their baby boy, who had yet to enter this world. They followed their gut instinct and refused to give up asking questions until they were satisfied with the answers.

The possibilities are endless, as Matteo surprises his parents each day with what he has accomplished and how far he has come. They want what every parent wants, to see their child grow up, and be a successful and happy adult. Where success means doing the best they can with what they have. Success is in the doing, not the getting — in the trying, not the triumph.

“Matteo is truly a gift from God. he has taught us so much in such a short period of time. He shows us how important time really is in life as it is one thing in life that you cannot get back or do over. Matteo is our Tiny Light, who can brighten up an entire room when he enters.”

Julian's Story

Images Captured by Photography by Eiko

This is Julian.  Isn't he adorable?  Let us tell you a little bit about this boy.  He loves music and, of course, the best part of music – dancing!  If Julian catches a glimpse of a puppy dog, he is instantly in love.  He also surprised his mom in the delivery room.  His mother had been told that he was to be a girl, so she was shocked when it was announced that he was a bouncing baby boy!  He almost went home in pink!



When Julian was seven days old, he went into heart failure due to cardiomyopathy.  Basically, the left side of his heart was so enlarged that it was no longer pumping the oxygenated blood to the rest of his body efficiently.  This resulted in him needing a new heart.  At three weeks old, he underwent open heart surgery to put in the canals (tubing that is inserted into the heart and secured to the chest wall) that would exit his body through his abdomen and attach to the most amazing machine his mother had ever seen: The Berlin Heart.  This allowed him to be less sedated.  As a result of the trauma his body went through, he suffered a stroke on the left side of his brain which effects the right side of his body.  It was now time to wait for a new heart. 



On January 17th, 2009, his family was told that Julian would be going into a ten hour surgery for his heart transplant.  Obviously, his mother was devastated when she first found out that her baby was sick, but with the help of her family, she pulled herself together.  She had to be strong for her baby boy.  She was by his side every moment, along with her family.  She believes that this is what kept Julian fighting, the love he felt when his family members did not leave his side in the hospital.  Finally, at four months old, her son left the hospital to go home with his mother. 



His mother believes that everything happens for a reason, and although it is a struggle, Julian has brought so much to her life.  He makes her a better person.  She loves to watch him smile, laugh and play.  Julian is now developing and growing like any other 18 month old.  He recently started walking; what a proud moment for both of them!  He has a drive to be independent like no other.



Julian will likely need another transplant in twenty or so years, but they will deal with that when that day comes.  For now, they are living life to the fullest – living, laughing and loving.



Story by Billie Depatie

Ethan's Story

Images Captured by Brooks Photographic

Ethan is a Tiny Light who loves trivia; did you know there are six different types of bacteria living under your arm?  Ethan knows!  He also loves James Bond, Tae Kwon Do, and collecting things – he will collect almost anything.  Ethan’s mom loves to hear him sing, and says that it does not matter if he is in tune or keeping time; he has a way of making it sound perfect. 

Ethan’s diagnoses include ADHD, Non-verbal Learning Disorder, Generalized Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Cognitive Functioning.  Although it seems a lot to deal with, Ethan’s parents were actually relieved to finally get the diagnoses.  Having something concrete to go on not only gave them comfort that they were not “crazy” for thinking something was wrong but also a jumping off point for dealing with all the challenges that Ethan faces. 

While he faces many challenges, Ethan also has many strengths.  He is kind and generous.  He sees the world with a child’s sense of innocence.  He is unbiased and honest.  He loves with his whole being, holding nothing back, and he has a quiet strength and resilience that amazes people around him.

Like most parents, Ethan’s parents hope that he will grow up happy and healthy.  While things seem difficult sometimes, they have faith that they will be able to get through it all.  They want him to find joy in simple things and know the unconditional love of family.  Ethan makes the world a better place and his family count themselves lucky to be a part of his world. 

Story by Shauna Salmon