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

Henry Lee's Story

Images Captured by Misty Dawson Photography

Meet Henry! A Tiny Light born prematurely at 34 weeks on October 8^th, 2010. He has a big sister, and loves to play. He loves getting raspberries (and giving them too!). He even laughs at his mom’s singing. She thinks he has a goofy sense of humour already. Henry is a strong and happy little boy. He has recently learned to roll over, and from there, he hasn’t stopped! He can get around the room in no time at all. 


The pregnancy with Henry was fairly normal, but the prenatal screening tests came back with a 1:8 risk of having a baby with Down Syndrome. At 21 weeks, his mother had an amnio and found out their little baby had Down Syndrome. At first, his mother was mad. She knew the risk were high (1:100), since she was 41 when she became pregnant. She asked herself, “Why me?” Over time, Henry’s parents were able to accept this information and move on. Henry also has Moderate VSD, which is a congenital heart defect.


Henry has inspired his family to celebrate the small milestones. Since Henry has developmental delays, his family doesn’t take “small” milestones, like smiling, laughing or reaching for a toy, for granted. They celebrate every milestone and marvel at his new abilities.


His parents know that his development will be delayed, but it is too early to know the level of his functionality. “It's okay to grieve the "loss" of what you think may be missing from your child's life, but, watch out - you will be amazed at how much you have to celebrate as well!” Henry’s parents hope for him to live a full life, with friends, school, work, and support from his loving family. They want Henry to be whatever he wants to be and to be proud of his accomplishments along the way – and maybe even compete in the Special Olympics!


“He has found a special little corner in my heart, set up camp, and has stayed there.  That's his home.” 

Story written by Laura Bellefontaine

Vienna's Story

Images Captured by Baotran Pham Photography 

Little Vienna may be only 4 years old, but to her parents and big sister, this Tiny Light has opened up a whole new world of joy and wonder. 


Diagnosed with Atrioventricular septal defect (two holes in her heart) and Down syndrome while in utero, Jennifer and Joel were determined to learn as much as they could about their baby girl’s conditions before she was born.  Since then, Vienna has had numerous hospitalizations, dozens of doctors appointments, open heart surgery, and hours of therapy.  But that hasn’t been the toughest part of the journey for this family.  They have faced an uphill battle with friends and family who haven’t known how to cope with Vienna’s diagnoses. 


Along the way, this beautiful girl has constantly amazed her parents.  “I have never seen a child enjoy life and the little things as much as Vienna.”  Her eyes light up when mom and dad sing “Itsy Bitsy Spider”.  She cheers for her big sister’s soccer team by shouting “Go, go, go!” Even after a long day at the hospital, Vienna is full of laughter.  And she loves snuggling into mom’s shoulder at night. 


Her parents have so many dreams for Vienna.  “If you focus your energy on what your child is not doing, you may miss out on something amazing your child is doing currently.” And no matter what path their daughter chooses, their most ardent hope is she will be surrounded by genuine caring people who accept her. 


Written by Elaine Yong

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

Meet Adam

Images captured by End Of The Road Photography

Meet Adam. In only two short years this Tiny Light has already taught his parents so many things. They’ve learned to trust in God, to ask for and accept help, and that no matter how hard things get, the world keeps on turning.

When Adam was born seven weeks early, they knew right away something wasn’t right. Five days later they were given the diagnosis and they struggled to deal with the news and the many emotions attached to it. Their baby had Down Syndrome and they were in a fog of confusion for the next few weeks as Adam started his life in the NICU. 


Looking back his mom wishes things could have been different. That acceptance could have come faster. "I feel a bit sad that Adam’s first two years are over. Sad that I didn't enjoy his babyhood as much as I should have. Sad that I wasted way too many tears, and hours and weeks of worry... when I could have replaced those tears and worry with love. Simple PURE and beautiful LOVE. “

Adam gives the best smiles. He loves to wave and wave and wave. He also loves to clean up. Anything and everything goes in the garbage:  his Daddy’s wallet, Mommy’s keys or his big sister’s camera! 


“We know that our little man came to complete our family. We love him with all that we have. We look forward to teaching him... and even more importantly learning from him."

Today they are looking forward to all the excitement and challenges that their future holds. Their greatest hope for ALL their children is their happiness. Their greatest goal is to do right by them.

 Story by Sue Renaud

Meet Madison!

Images Captured by Stephanie Fieldberg Photography

This is Madison.  Madison loves Max and Ruby.  She loves to stack paper and spin shoes.  Madison also loves ice cream.  Madison has Down Syndrome and Autism Spectrum Disorder.  She has seizures, thyroid issues, and has had Atrial Septal Canal Defect with holes in her heart, which required corrective surgery when she was just three months old.


It was not until after she was born that Madison’s parents were hit with the news that their baby had Down Syndrome.  Before this news could even sink in, she was sent to another hospital to confirm her life-threatening heart condition.  “It was a rollercoaster of emotion.”


The diagnosis of Autism is a new one for Madison.  Eleven years later, her parents feel that this diagnosis helps them to understand why Madison does the things she does.  They have taken the Autism diagnosis and are now moving forward, making things work for Madison instead of against her.  Madison’s speech is limited, so there is hope that her communication skills will improve with the help of therapy.  She is a happy girl, and no matter what in life is thrown at her, she keeps laughing and finding the joy in the small things.  Who wouldn’t be inspired by this!?


Madison’s parents do worry that she will not move past the level she is at now.  “Part of learning about life is learning how to keep going…even when times get tough.”  And it has been tough for this family!  But there have been many positives, such as learning the joy and laughter that a child with Down Syndrome can bring into your life.  “There is nothing like a hug from Madison.  She puts all of her heart into it!”

Story by Angela Stephen-Dewhurst

Nicolas' Story

Images Captured by The Labour Union Photographers

This Tiny Light was born by emergency C-Section on December 25, 2010, and for that reason, his parents gave him the name Nicholas. He adores his older brother, and with steady gaze always tracks his brother’s every move. He loves grabbing hair and hoodie strings and has a special ability of making every grown up turn to mush.

Nicholas was kept in the intensive care unit for three weeks before receiving a diagnosis of Down Syndrome. All that his mom could do was hold him and apologize to him. “My initial response was complete sadness for this little baby in my arms, who would not have every opportunity in life that he wished for, and who would undoubtedly face challenge after challenge in simple life tasks.”

This was not a journey any of Nicholas’s family prepared for and it can be difficult at times trying not to think about what could’ve or should’ve been. “Down Syndrome has such a range of developmental disability, and we won’t know for some time where Nicholas’ challenges will lie.”

Although being a parent of a child with special needs brings more challenges, there is always a shining feeling of hope — hope that he finds meaning in his world, hope that he experiences the good things the world has to offer. “Our families have been very supportive. I am also pleasantly surprised by the abundance of community supports which are completely funded and very accessible.” It is only the beginning for Nicholas and his family, but at the end of the day when he is gazing back at you, sleeping soundly in his parents’ arms, this Tiny Light has all the love he needs to get by in his future journey through the world.