Meet Little Darius

Images Captured By Rhonda Steed Photography

Meet Tiny Light Darius.  Born only this past March, Darius has already overcome many obstacles.  Each day, he demonstrates to his family and friends his willingness to fight and grow stronger.

Darius was born prematurely at twenty seven weeks, both him and Mom experiencing many complications along the way.  His doctor expressed serious concern when his white blood cell count came back high, and he was put on a Continuous Positive Airway Pressure (CPAP) machine to help regulate his breathing.  At one month of age, moisture was found in his lungs and doctors continue to clear them out.  It is uncertain as to whether or not Darius will experience difficulty in areas of development in the future.  

The hardest part of their journey so far has been the first few days when Darius needed to be isolated; his parents were only able to touch him through the holes of the isolette and were unable to pick him up.  He was on oxygen, and had many wires and tubes helping to improve his health.  At the time, Dad was also working in Lethbridge and was only able to make it to Calgary to see them on the weekends.

His parents have learned that asking questions and being willing to do anything for your child will help bring you closer to your baby sooner.  Support from family and friends helps Darius’ parents keep strong and stay positive when they are feeling anxious.  

Darius’ test results continue to come back positive, alleviating some of his family’s fears.  Even though Darius is still small for his age, he has started cooing and kicking while playing in his crib.  He also enjoys checking out the scenery around him.  His family is hopeful that Darius will catch up and pass all of life’s milestones; they have faith that he will grow up to be a very bright child. 

Story written by Kristi Hall - Busque

Tiny Light Journey

Images Captured by Jennifer Kapala Photography

Tiny Light Journey has the perfect name because his first few months of life have already been quite the journey. Doctors gave him only a one in five chance of surviving past the first few days and now he is already five months old.

The diagnosis in utero of Tetralogy of Fallot (a heart defect) and an extremely rare genetic disease - Diamond Blackfan Anemia (DBA) - was devastating for parents Doug and Coreina. Journey arrived early at 33 weeks after an in utero transfusion procedure put his mom into labour.

Since then, this tough little baby boy hasn’t stopped fighting. He spent his first two weeks of life in the NICU and then he was transferred to the PICU. There have been countless tests, procedures and medications, with heart surgery in the future. He is surrounded by so much medical equipment so any cuddling time is very precious.

Most patients with DBA suffer severe chronic anemia due to bone marrow failure. The condition can sometimes be managed with intensive drug therapies or repeated blood transfusions – both options have multiple potential side effects. The only cure for DBA is a bone marrow transplant, also fraught with risks and complications.

While the family continues to hope there will be a cure for DBA one day, they are learning to appreciate the simple things in life. Tiny Light Journey has brought so much, “We realize what a great family we have and just how strong we are together. We know that with each other, we will all make it through this journey.”

Written by Elaine Yong

Zachary's Story

Images by Portraits by Josée

As a triplet, Zachary was surrounded by love even before he was born.  When he and his brothers arrived two and a half years ago, their older sister was thrilled.  Now, Zach has a younger sister who helps look after him too. This Tiny Light has flourished with all that love and support.


Parents Barbara and Simon say their children are too young to understand what Zach’s diagnosis of cerebral palsy means, but they all know he is different. “Zach’s  womb-mates are gentle with him, without being  told.  They laugh and joke with him without being affected by his physical differences.” His older sister carries him around, and his younger sister is often down on the floor playing with him.


Doctors told the family Zach had a brain injury less than one week after he and his triplet brothers were born. But they did not get the official heartbreaking diagnosis of CP (affecting all four limbs of his body) until 11 months later.


Since then, life has changed completely for this resilient family. Taking care of Zach is more than a full-time job, and the expenses for special equipment and therapies continue to add up.


But there is also so much joy.  “When you have a child who struggles to do things everyone else takes for granted, you have such an appreciation for every little thing your child learns.” Zach loves to bike, swim, and play ball.  He often sings to himself while playing. He enjoys reading books about trains or animals. Right now, he is learning his letters and can spell and recognize his name.


There is good news for this happy little boy’s future. Before, doctors didn’t think Zach would ever walk, but with so much determination and spirit, this Tiny Light will likely be able to get around in a walker. As his mom says, “We joke constantly that someone forgot to tell Zach he has CP.”

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

Erin's Story

Images Captured by Crystal B Photography

This is 8-year-old Tiny Light, Erin. Erin loves to sing and draw... and shop! She is technologically savvy, and great on the computer!

In the summer of 2010, Erin had a swollen eyelid that would not get better. She was referred to an opthamologist where she had an MRI and was booked for surgery two days later. A tumor was removed from Erin’s right orbital and was found to be rhabodmyosarcoma. This was suspected the day before the surgery. Both Erin and her parents were devastated. “We felt like the bottom fell out of our world.” Seeing Erin sick and not knowing what the outcome would be was difficult for her parents.

Erin underwent over 45 weeks of chemotherapy. Throughout this long treatment, Erin was positive and still went to school when she was able to do so. “She is so strong and amazing.” Chemo is now over and now everyone’s fingers are crossed for clear scans and no more tumors.

Erin's parents’ hope for their daughter is that she will never have to fight cancer again. They wish for her to grow to be a happy, healthy adult and that she won't have any long-term effects from the chemotherapy. While the fear of the cancer returning will always be there, they don’t think about the negative. They focus on the positive!

Story by Angela Stephen-Dewhurst

Bentlee's Story

Bentlee is only a few months old, but this Tiny Light has given her parents the strength to look forward to the future.  She has also become her big brother’s best playmate, spending lots of time together with her favourite toys.

Diagnosed in utero at the 18 week ultrasound, parents Jamie and Chelsey were told their daughter has one of the most complex heart defects – Bentlee’s heart only has one ventricle instead of two and both her major arteries are switched.  It is very hard on the heart to get oxygenated blood to the whole body.  Her pulmonary artery is also narrowed, restricting blood flow into the lungs.

Bentlee will require a major heart surgery in the next month or two, and then another surgery when she is a toddler.  In between, there will be dozens of tests and appointments, and possibly a few smaller surgical procedures.  Doctors have no idea what a life span is for Bentlee.

Her parents weren’t sure they would be able to cope when they first found out about Bentlee’s condition, but this Tiny Light has brought the family even closer together.  “We just try to stay in the present and love her and treat her like any other normal baby.”
 
Written by Elaine Yong

Tiny Light Hudson

Images Captured by Rhonda Steed Photography

Meet Tiny Light Hudson!  This three-year-old boy loves to dance, do puzzles, play with cars, and pretend that he is Superman!  Hudson's name means, 'A strong and courageous promise' – fitting for this young boy.

Days before his third birthday, Hudson was diagnosed with Type One Diabetes.  The diagnosis and every day since has been terrifying.  His parents are still learning, on a daily basis, how to care for him.  While his symptoms were typical of diabetes, it had never crossed their minds.  Hudson is now dependant on daily sugar tests and insulin.

Hudson's Mom still struggles with giving him needles daily.  Hudson is a brave young man, and his parents know that his life depends on these needles.  Hudson has an amazingly positive attitude and is brave for his shots. "I never knew how strong my little boy was until this all happened."

Hudson and his family are blessed with an amazing support group of family and friends, as well as a new community of parents of children with Type One Diabetes. His parents know that he will be able to do anything he puts his mind to, "Climb a mountain ... be an athlete ... anything."

Hudson's parents have created a blog that is to serve as a diary for Hudson.  They hope that his journey will show other people with newly diagnosed children that they are not alone.  To follow Hudson's story visit www.snowflakesinjanuary.blogspot.com

Story by Angela Stephen-Dehwurst

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

Grace's Story

Images Captured by InView Images

Meet Tiny Light Grace. Grace is an amazing big sister. She loves to snuggle in bed with her little brother every morning. She loves the swings, and is an amazing bike rider. Grace loves getting into mischief, and is often found Skyping her friend Nathan!


When Grace was three-years-old, she developed a cold. Her parents began to worry when it lasted longer than her usual two-week colds. They became very concerned when Grace’s face began to swell. A few weeks later, Grace was diagnosed with Focal Segmental Glumeriosis, a rare kidney disease. This meant that her kidneys were not functioning properly, and were letting all things, good and bad, flow out of her kidneys.


Because of a lack of information, her parents expected a round of steroid treatment to take care of the problem. In reality, their journey was just beginning. It has been difficult watching their daughter, as strong as she is, suffering through complications of being immunosuppressed, and at the end stage of chronic kidney disease, while waiting for her kidney transplant. Still, Grace never complains. Even while she was on life support, she fought hard to communicate even though it was hard; not wanting her loved ones to worry.


Grace does what she knows she has to do! She drinks three liters of fluid daily, and takes a multitude of pills to try to maintain her kidney’s health. Grace’s parents do what they can to decrease risk of infection, often having to isolate Grace. They are thankful for the families that they have met with similar circumstances. “Although no two children even with the same disease are the same, the sharing of experiences has really normalized our exceptional life circumstance.” They are thankful for all of their support, especially Grace’s Grandparents…”Our backbones”.  


Story by Angela Stephen-Dewhurst

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