Donovan's Story

Images Captured by Asher Images

Meet Tiny Light Donovan. He loves shaking his maracas and enjoys spending time in his therapy pool. His brother and sister talk to him, read to him, and play with him every day. He can’t communicate verbally, but expresses himself by clapping and humming.
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it.  Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”

Story by Emily Harrison

Rachel's Story

 Images Captured by GingerSnaps Photography

Tiny Light Rachel can and will do anything she sets her mind to.  She is a happy, intelligent, and loving little girl who enjoys singing, swimming, reading, and swinging.  Rachel also likes playing practical jokes, especially hiding behind doors and jumping out at people yelling “Boo!”  Her siblings adore her, and she touches the hearts of everyone who takes the time to get to know her. 

Rachel’s parents were told that she might have Down Syndrome when she was just one month old.  They were anxious as they waited for the results of her tests.  When she was diagnosed, they were devastated.  However, they quickly came to the realization that they were given a gift.  Their faith helped them stay strong, and they made a point to focus on their beautiful baby girl, rather on her diagnosis.

Initially, Rachal’s parents worried about her future, but now know that “she will get as much out of life as she wants.”  They hope the same thing for Rachel as they do for their other children: to meet a nice boy, get married, and have a job.

As her parents say, “Having a child with Down Syndrome isn't always easy…but the joy that these amazing children bring, far outweighs the scary stuff.”

Story Written by Emily Harrison

Sam's Story

Images Captured by Anastasia Photography

Meet Tiny Light Sam. This happy little guy loves snuggling with his mom, playing with his dad, and watching his sister be silly.Though he has had more happen to him in the first year of his life than most people go through in a lifetime, he greets every day with a smile.
Sam was born at 27 weeks and 5 days, on his father’s 40th birthday. He weighed only 698 grams and spent 110 days in the NICU, requiring respiratory support nearly the whole time and undergoing numerous procedures including blood transfusions, x-rays, heel pokes, and drug treatments. Through all this, his parents remained optimistic, hoping to send positive energy to their son.
Today, Sam weighs over 14 pounds and is nearly meeting all developmental milestones. He may face motor and cognitive delays and his immune system and lungs are compromised, but he gets stronger every day. Sam’s mother encourages families to reach out to each other while in the NICU. This helped her stay strong and also resulted in making new friends who understand the struggles of raising a child born prematurely.

His parents are concerned about what challenges may lay ahead, but know that their son is strong. “I worry that the possible developmental delays he may experience would mean that he has to work harder than some but I know already that he is one tough cookie!”

Story by Emily Harrison

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

Meet tiny light Logan

Images Captured by Mercedes Leung Photography

From the moment he was born, Tiny Light Logan has been surprising everyone with his achievements. He wasn’t supposed to survive yet he has thrived. He wasn’t supposed to see yet he does. He wasn’t supposed to walk yet it’s now impossible to slow him down. This determined boy has shown everyone how each moment is so precious.

At 8 months of pregnancy, parents Renee and Alan found out their baby’s brain never fully developed in utero. Doctors urged them to terminate because they did not think the child would survive long after birth.  The family decided not to listen to that advice. Logan was born with a number of medical challenges, including a growth hormone deficiency called panhypopituitarism. He also had hydrocephalus – a buildup of fluid in the skull – and he was blind at birth.

Logan is now 12 years old and succeeding at school. He has mental and physical challenges, but he never gives up.  “He goes through his surgeries with such strength and hope. It teaches us such important lessons about life.” Logan also brings so much laughter to his family with his wicked sense of humour. This funny guy loves to use his imagination to play pretend, spend time outdoors and help out with chores.

The future is a great worry for Logan’s mom and dad. They hope their son leads a full life surrounded by happiness. Already, this Tiny Light is doing just that, one small success at a time.

Written by Elaine Yong

Meet Jamie

Images Captured by Thibodeau Designs Photography

Meet Tiny Light Jamie!  This sweet two-year-old has an amazing ability to make people smile.  She loves playing with her cousins and spending time with her grandparents.  Jamie has her Daddy tied tightly around her finger!

When Jamie’s Mom was 20 weeks pregnant, it was discovered that Jamie has Hypoplastic Left Heart Syndrome.  This means that the aorta and left ventricle are very small, and that the aortic and mitral valves are either too small to allow sufficient blood flow or are closed all together.  As blood returns from the lungs to the left atrium, it must pass through and atrial septal defect to the right side of the heart.

Jamie’s parents were devastated at the diagnosis of their baby.  Still, they knew that this was their child, and they loved her regardless of any issues that she had. Jamie’s parents have had the hardest time seeing their sweet girl after surgeries, hooked up to machines. But they remind themselves that it’s all to help Jamie.

Jamie’s parents encourage other families with ‘Heart Babies’ to live life day to day with their child, keeping their heads up.  “They may be ‘special’ but they are your ‘special’ child.”

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 27th, 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

Meet Abigail

 Images Captured by Vanessa Balenovich Photography

This Tiny Light loves anything athletic. Her mom is sure that when her treatment is done and she is feeling better she will be right back into soccer and dance!

Abbye has acute lymphoblastic leukemia. This diagnosis was made at when she was three, on Christmas Eve 2010. Her mother’s first reaction was numbness. She remembers being told that her baby was sick and that they were going to make her better. Her focus became making Abbye comfortable as much as it did making her better.

A child life specialist helped her family to explain to Abbye that she was sick and that she would have to take medicine until she was six. This innocent and sweet little lady’s immediate assumption and fear was that she had had too much chocolate milk. Abbye’s independence has diminished. She stopped walking after a lumbar puncture in January. Other things she can’t do because of the PICC line.

Though there are frustrating times for Abbye (resulting in major fits), she has for the most part handled thing in a way that amazes everyone around her. Though she is only four, she has a desire to be involved with her treatments. Despite the chemo and many medications, Abbye still wakes up most days wanting to play.
Abbye’s mom admits that some days it’s nice to just curl up and watch movies in bed with her little girl. She stresses the importance of taking advantage of the days that sick children do have their energy! She looks forward to the time when this part of their family’s life is behind them, and Abbye can enjoy life to the very fullest. While she fears things taking a turn for the worse, she is constantly inspired by Abbye’s personality and strong will. "Whenever I see her I know that I need to be strong, because if I’m not strong for her then everything might just fall apart."

Story by Angela Stephen Dewhurst

Mikaela's Story

Images Captured by Michelle Wells Photography

Meet Mikaela. This Tiny Light is happy doing regular newborn stuff! As long as she is eating she is happy!
Mikaela was born 13 weeks premature. She was one of two co-existing twins in a molar pregnancy. The egg had split into what would have been identical twins, but one didn’t develop. Mikaela did. Because there have only been 300 documented cases of this scenario since 1954, the doctors were unsure how to care for them. After putting up a huge fight, Mikaela’s mother convinced the doctors to let her continue with the pregnancy.

It was found out after Mikaela could not be weaned from oxygen, that she had BPD, a chronic lung disease that affects newborn babies. She will continue to have follow-up appointments every two weeks for this condition. She also has follow-ups for her ROP (retinopathy of prematurity).  She has passed three tests so far!

The most difficult part of this journey for Mikaela’s mom, aside from the health problems that Mikaela has been challenged with, is only getting to see her other daughters on weekends. While it was necessary for her to be with Mikaela, she longed for her other children.

Mikaela has doubled her birth weight, an amazing thing for everyone around her to see. She has also learned how to nurse and come off of CPAP (continuous positive airway pressure). Mikaela continues to progress so much, making every day amazing and spectacular. Mikaela started fighting long before she was even born to live. “The road is long but worth every second. Thinking about the past few months brings tears of joy!” 

Story by Angela Stephen-Dewhurst

Mason's Story

Images captured by Donna Larmour Photography

Mason is a Tiny Light that couldn’t wait to shine.  He was born early at only 33 weeks gestation, but was healthy. He weighed 6lbs 12oz and the doctors were unsure of why he came so early.  It was only 4 days later a clot was discovered in his kidney after his noticed his blood pressure was rising to dangerous levels.  Mason was transferred to the Childrens Hospital of Eastern Ontario (CHEO). At 5 days old during a precautionary ultrasound before starting him on blood thinners, a grade 4 brain hemorrhage was discovered.  Instantly his parents were faced with the fear of the unknown.  Mason was in serious danger of being physically damaged for the rest of his life, being confined to a wheelchair or being in and out of hospitals for his whole life.  The hardest part was that he had two opposite conditions, because of the brain bleed they couldn’t treat his kidneys and his parents were forced to sit and wait and worry about their future.

It was unbearable for Mason’s mom as she sat and feared the worse. A nurse came over to her and told her that she was going to get through this and that what she could do for was to love him, because she was his mother and “no one could love him like she could”. She will never forget that. It made her realize not to take life for granted and to enjoy the little things.  The most amazing thing was watching her baby boy smile throughout it all. Despite everything, all the needles, surgeries and medications they could always see him smile in his sleep.  Most people look at him and have no idea what he's been through. He looks so normal and happy that they have no clue he had it so rough until they see the shunt on the back of his head.  The shunt was necessary due to the hydrocephalus he developed because of the brain bleed. He is an amazingly easy baby and at 6 months he sleeps through the night and only cries when he is hungry or sleepy.  His parents still have many follow ups at CHEO.  He is on blood pressure medication for a little while longer and he will always need to monitor his head to make sure the shunt is still working.  They won’t know for awhile what effect the brain bleed has had on him but the worse case scenario was that he would not be able to work the right side of his body.  Already his parents know this isn’t the case.  He can definitely move all his body and only has a slight dysfunction in his right arm which is steadily improving.  Even though they still worry that he might have some cognitive damages to his brain they are hoping for the best and trying not to live in fear.  As he develops, they may discover more but they are confident that they can handle whatever it is because he is already doing way better than they ever expected. 

Story by Sue Renaud