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

Charlie's Story

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Image Captured by Light on Paper Photography


Tiny light Charlie loves to play with crinkly toys, roll around on the floor, and play in his jolly jumper.  He also loves to eat!  His smile is infectious and despite the challenges he has faced in the first few months of his life, Charlie has remained strong and happy.

The day after he was born, Charlie’s doctor noticed a heart murmur, and testing revealed a Ventricular septal defect, anAtrial septal defect, as well as Tetralogy of Fallot (TOF).  These heart defects resulted in Charlie going into congestive heart failure shortly after he was born.  Initially, his parents were told that he would require surgery at approximately six months of age.  However, after ten weeks he had barely gained two pounds, even though he was on high calorie formula and a feeding tube.  It was determined that he would need surgery earlier than expected.  At just 12 weeks, surgeons repaired his heart, and the surgery was a success!  He is still small but should develop into a healthy little boy.  He will require yearly visits to the doctor until he is five years old, but should not require any further surgeries.

Charlie’s parents have some advice for others facing similar journeys: “Although it is incredibly hard and you don't know what is going to happen, you have to stay strong, do your research and be prepared.  Ask questions and find others who are going through the same thing.  Join groups for support and stay positive.”

Story by Emily Harrison

Emma's Story

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Images Captured by Simply Rose Photography

Meet Tiny Light Emma. This sweet little girl loves cuddling and spending time with her family. She has already been fishing and camping on the Skeena River!

At a 28 week routine ultrasound, Emma was diagnosed with Down Syndrome and an Atrioventricular Septal Defect (AVSD). This means she was born with holes between the top two chambers of her heart and the bottom two chambers of her heart. Emma had heart surgery on December 5, 2011 and it was a success! She will be followed by a cardiologist for the rest of her life and may or may not require additional surgery to further repair or replace a valve in her heart. So far, Emma is meeting all of her milestones and bringing so much joy to her family.  

Emma’s parents are overwhelmed by the incredible support shown by their family, friends, and others in their community. In her mother’s words: “family do more than they should because they love us...friends really do care...and strangers can be a great source of support and encouragement.” They hope that Emma will continue to touch and inspire those around her. “She has already shown us that we need to slow down and live in the moment.  So much of our life is out of our control and every moment has the potential to be so precious.”

Story by Emily Harrison

Amber's Story

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Images Captured by Jennifer Boggett Photography
www.jenniferboggett.com


This beautiful Tiny Light will not burn bright for long, but her spirit and determination shine strong. Amber’s condition is deteriorating and she is now receiving palliative care, yet she continues to bravely meet each day with a smile on her face.

Amber has esophageal atresia, a condition where the esophagus does not develop properly. She also has left vocal chord paralysis, left optic nerve atrophy and cerebral dysgenesis. This means she aspirates on oral feeds or secretions, as well as g-tube feeds. Amber has frequent aspiration pneumonia that has caused severe bronchiectasis - destruction of the large airways. She is developmentally delayed and only functions at the level of a 1 or 2 year old.

The goal now is to give her the best quality of life possible, no matter how long. Amber is surrounded by a huge circle of loving family, including grandparents, stepparents, and siblings.  This strong 12-year old girl loves to listen to music and loves to dance, but her favourite activity is playing with her Elmo puppet. Her wish is to meet Elmo and at the end of November, that dream will come true. Thanks to fundraising efforts, Amber and her family are going to a Sesame Street Resort in Jamaica where Elmo will read her a bedtime story and tuck her in at night.

For mom Tara, the journey has not been easy, and her daughter’s worsening condition has meant many tears. But this Tiny Light has also brought so much inspiration, “She has taught me to live life to the fullest and be true to myself no matter what. She helped me see what is important in life and that is family – love and happiness.”


Written by Elaine Yong

Kayla's Story

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Images Capture by Matt Brennan Photography

Don’t underestimate this Tiny Light. Kayla can read, spell and do math the same as any of her Grade 4 classmates.  Her parents describe her as a bright, intelligent child trapped in a body that doesn’t function normally.


By the time Kayla turned 1, mom Christinea and dad Christopher knew something was wrong. But it took a year and a half of countless medical visits and tests before their daughter was diagnosed with Rett Syndrome. It’s a disorder of the nervous system, affecting almost exclusively girls, that leads to developmental reversals, especially in the areas of language and hand use.


It was the most heart breaking news for the family. “We decided that night that she was Kayla and we would not love her any differently.” The path has not been easy, especially because this beautiful girl’s future is unknown. While many children with Rett Syndrome have a normal life span, it is degenerative and they can lose the ability to walk, touch, hold something or swallow.


Now 9 years old, Kayla is one determined girl. She always manages to find a way to get what she needs and wants. She loves to swim, dance and socialize. She enjoys watching movies and playing baseball too. This Tiny Light is an inspiration to her mom, dad and big brother Riley, “We want Kayla to be happy, to love and feel acceptance. She is our silent angel.”


Written by Elaine Yong

Ryker's Story

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Images Captured By Melissa Weicker Photography
www.melissaweicker.com

Tiny Light Ryker is a fighter who has already overcome many obstacles in his life.  His struggles began sometime after his mother’s 20 week ultrasound.  He stopped receiving the nutrients that his growing body needed and had a stroke in utero without his parents’ (or doctor’s) knowledge.  His mother’s pregnancy and delivery went smoothly.  However, his parents started having some concerns when he was only a few weeks old.  He cried day and night for months, was not attempting to reach for toys, and his body appeared weak as he could not support his own head.

After visiting several doctors who assured them that nothing was wrong, they were referred to a pediatrician who ordered blood tests and an MRI.  While the blood tests came back normal, the MRI showed that Ryker is missing a significant amount of white brain matter covering the surface of his brain.  He also has two large, fluid-filled cysts in the center of his frontal lobe caused by a bleed in his brain.  Instead of forming scar tissue, his body reabsorbed the damaged tissue.  He was diagnosed with spastic quadriplegic cerebral palsy.

Ryker has had a few seizures, but has seems to have outgrown them and is otherwise healthy.  He can now pick up and play with toys and has learned to “commando crawl” - a move that his little brother appears to have taught him!  How much control Ryker will gain over his muscles in the future is unknown, but his parents are hopeful.  He has provided his family with so much joy and laughter, and in his mother’s words: “His smile will melt your heart, mine melts everyday!”


Story by Emily Harrison

Sofie's Story

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Images captured by Mellissa Receveur Photography


If you could measure hope on a scale, then darling, little Sofie would have weighed in at much more than her 586 gram birth weight! Sofie was born 16 weeks premature but started her fight for life much earlier than that. At 22 weeks gestation, her mother started to dilate, and three days later, her water broke. Sofie's parents were told that there was no hope. She showed them all that it was up to her! She hung on for nine more days and was born via C-Section at 24 weeks. She went on to amaze everyone during her 140 day stay in NICU, with her tenacious personality being exhibited while she was pulling out her breathing tube and feeding tubes. I can just hear her at two years old telling everyone, "I can do it myself!”


So at her corrected age of five months, this Tiny Light has fought her way through three months on a respirator, a round of antibiotics, fives blood transfusions and numerous X-rays. She has passed the hearing test, avoided laser eye surgery after a worrisome bleed, and has taken well to nursing and the bottle. It’s no wonder this little spark brings smiles to everyone she meets! Who can resist a girl with spunk?


Grateful for the professional support they have had, her parents wish to remind other parents that while in the hospital, “you are your child’s voice – stand up for them by being informed and strong."


Sofie's mother hardly dared hope for the life of her little one before her birth. Now Sofie shows her that there can always be hope. She inspires her Mother with a strong will and determination to fight for each milestone. Sofie's Mom says, “You can never have a bad day or feel sorry for yourself when you just have to look at her and see a beautiful happy girl who grows in front of your eyes; smiling, happy, laughing, chatting and watching hockey with her Dad."


This amazing little fighter is not out of the ring yet, with a compromised immune system and a barrage of therapies to get through, her parents believe that, "the Sky is the Limit!"  They will continue to challenge and encourage her with hopes that their baby will grow up to be a "strong, bright, independent girl who has big goals and dreams." 


Story By Francis Cawley

Gabrielle's Story

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Images Captured by Matt Brennen Photography


Meet Tiny Light Gabrielle.  She is strong, she is calm, and she is beautiful.  Gabrielle enjoys smiling, babbling, watching her brothers play, looking lovingly at her daddy when he holds her, and relaxing at the sight of her mom. 


It was apparent that something was wrong at birth, and from there, the family was sent to the NICU at BC’s Children Hospital for testing.  Within the span of a week and a half, Gabrielle had to undergo test after test until her diagnosis was determined.  Gabrielle was born with I-Cell disease, which is a lysosomal storage disease.  This means that she is missing an enzyme that helps the cells in her body to clean up waste.  Over time, the waste can build up and begin to damage all organs in the body; it is thought that perhaps bone marrow or stem cell transplants may help to delay or correct the neurological deterioration that occurs with I-Cell disease. 


Being told that your new baby daughter has a terminal illness was the worst news they have ever received, but each family member has grown tremendously and the family has become stronger and closer as a whole.  While there are many milestones Gabrielle will likely not hit, her family instead chooses to focus on the ones that she will and to celebrate them fully.  They feel that they have been given a gif, and are hopeful that a recent transplant will greatly improve Gabrielle’s quality of life.


For the future, they will continue to support one another and fill their lives with love, laughter, trips to the beach, and fun with the family.  For Gabrielle, specifically, it is a promise of kisses and hugs non-stop for the rest of her life. 


Story by Kristi Hall-Busque