Annika's Story

Images Captured by BROOKA PHOTOGRAPHIC

www.brookaphotographic.com

Tiny Light Annika takes on life with such determination and joy, waking up every morning with a smile and giggles. This two-year-old little girl has faced challenges, but she does not get discouraged.

At six months old, Annika began having seizures, which took away all the skills she had learned, including her vision. She was eventually diagnosed with Dup15q syndrome, a very rare genetic disorder in which a small part of the 15^th chromosome has been duplicated. This means Annika has a number of medical conditions, including epilepsy, hypotonia, intellectual disability and speech difficulty.

Parents Lori and Michael do not see limitations for their daughter, only possibilities. Annika has been seizure-free for more than a year now, plus she can see, loves to crawl and swim. She is always full of laughs when she plays with her dog Lula or plays the guitar with Daddy. But the best is cuddle time!

This Tiny Light is the pride and joy of her mom and dad.   She has brought the family so much love and taught everyone about what really matters. “Annika showed up in this world bearing traits and qualities that people spend a lifetime trying to acquire. She is strong beyond measure, loving in abundance, joyful like she understands, and really understands why we are on Earth.”

Written by Elaine Yong

Benjamin's Story

Images Captured by Devon Hall Photographics

Despite everything Tiny Light Benjamin has gone through, he is always happy and full of smiles. This little boy has been a fighter since he and his twin brother Kyle were born at 25 weeks gestation. Benjamin weighed just 1lb 7oz. 


Doctors could not predict the kind of life Benjamin would have after suffering a stroke but parents Gary and Greta wouldn’t give up on their baby boy.  He has had many health challenges including surgery to repair a duct that didn’t close at birth. He also had hydrocephalus which required an endoscopic procedure on his brain.  Benjamin is fed through a G-J tube and he needs help with his breathing due to lung damage. He is on medication for seizures as well. 


Earlier this year, Benjamin became extremely sick from a respiratory virus. He ended up at BC Children’s Hospital for three months and had to be on ECMO (heart-lung machine) for two weeks. Doctors weren’t sure if this brave 4 year old would survive, but he has thrived. “He is back to baseline and even a little further. He is amazing the doctors with his progress since being so sick.” 


Benjamin loves playing with his twin brother and younger brother Devon. He enjoys going for walks with the help of a crocodile walker. He also enjoys music and reading books. This Tiny Light and his positive attitude have been such an inspiration to his family.  The future is uncertain but his parents have one big wish, “Most of all we hope he just enjoys being who he is.” 


Written by Elaine Yong

Denver and Dawson's Stories

Images Captured by Phorever Photography

This is Dawson.  A go-getter who is busy from the time he wakes up in the morning, until the time he goes to bed. He loves playing with trucks, trains and horses, and although he's been through so much in his young age, you would never know it by seeing him play. 


Dawson's parents found out at 25 weeks of pregnancy that he would have heart problems. He was born with a coarctation (narrowing) of the aorta, and a hole in his heart. His parents thought he'd already been through enough, but while he was still recovering in the hospital from heart surgery, at the age of three weeks, his screening results came back positive for cystic fibrosis. 


Today, Dawson takes up to 15 pills a day just to be able to digest his food, and while the hole in his heart may never close and he may require heart surgery in the future, his heart is doing well. With the medical advancements of cystic fibrosis patients, the median age of survival has recently been increased by 10 years, from 38 to 48 years of age. This gives his family hope that he will stay healthy long enough for a cure to be found. 


The advice Dawson's parents give to other families is to always look for the small comforts in life—there will be signs of hope where you least expect them. They say that reaching out to others has been invaluable, and by seeking out other families facing the same struggles will help you get through the day-to-day challenges. Dawson and his family have found strength within each other, and hope that he will grow to be a happy and healthy young man who follows his dreams. 


Story by Jag Nagra



Meet Denver, a brave young man who loves to play with cars and trucks, chase his dog around the house, and wrestle with his brother. Denver's parents found out 35 weeks into pregnancy, that he had a malformation of the brain called hemimegalencephaly. He was delivered by C-section 37 weeks into pregnancy, only one year after his older brother had undergone heart surgery and was diagnosed with cystic fibrosis. 


Since one side of Denver's brain was developing abnormally, and was larger than the other half, a radical 8-hour brain surgery was performed to help control his seizures, and he was given a shunt to relieve the excess pressure inside his skull. Before his two surgeries, Denver was having up to 100 seizures a day. He is now on three anticonvulsant medications, but still having seizures. 


Denver is surrounded by a tremendous amount of support from his siblings and family. His team of doctors has been amazing, and his aide is a godsend who he loves very much. Thanks to support groups online, his mom has met a number of other mothers in the same situation, and the support they give each other is amazing. Knowing that so many people from around the world are praying for him is uplifting to say the least. 


While technically Denver only has half of his brain, he works hard to learn new things. He's learning how to sit and stand, learning sign language, and understands much of what is said to him. His parents hope that one day, he will be able to walk, talk, be semi-independent and live a seizure-free life. They hope he will be accepted by others for exactly who he is. Denver's family believes he's a miracle. Only 4 to 10 babies worldwide are born with his condition each year, and some of them don't survive infancy. With numbers like that, who could argue that he truly is a miracle? 


Story by Jag Nagra

Meet Brogan, Mairin, and Keira

Images Captured By Trevor Allen Photography

Meet Brogan. 


This sweet four-year-old was diagnosed with childhood epilepsy last year. His first seizure was just over a year ago, when he was only three, and it was sudden and completely unexpected. After a month, Brogan suffered another seizure. Within a few weeks he was having multiple seizures a day. 


Within a few months of the first seizure, the diagnosis of childhood epilepsy was made. His parents felt a sense of relief at knowing. Still, this was a terrifying time. The seizures scared Brogan, often causing tears. He has been strong and now has a better understanding of what is happening. He is cautious on bad days, which his parents stress is so important for his safety. And to other parents in her shoes, his mother says: “Epilepsy is terrifying, it’s hard, and it’s frustrating. Getting control over the seizures is difficult but you will you get there.” 


Despite these interruptions, Brogan is a boy who loves trains, cars, and trucks — his favorite movie being Cars! He is excellent at doing puzzles. He is a big help with his little sisters, who he loves so much. 


His parents hope that he will outgrow epilepsy, though it is unlikely. While there was a time his seizures were out of control, medications have helped this. He is now in control and as he gets older he understands what to do while having a seizure to avoid falling or hurting himself. “We try not to think too much about the ‘what ifs’ and take each day one step at a time.”



Meet Tiny Lights Mairin and Keira. 


These sweet twin girls recently celebrated their first birthday! While they share their journey, they each have their own distinct personality. Mairin loves dancing and making faces that make people laugh. Keira is always on the move, and she adds words to her amazing vocabulary daily!


At 20 weeks gestation, it was discovered that there were two babies and that they had TTTS (Twin to Twin Transfusion). Without medical intervention, there was almost no chance of survival for the twins, so their mother underwent surgery that saved their lives. The girls were born at 31 weeks.


The TTTS has come with many other problems for the girls. Both girls have some brain abnormalities, and it still is not certain what this will mean for their futures.  Mairin also had a cloudy, almost white left eye, which has required two surgeries.  She has no vision in this eye, and her parents are hopeful she will not lose the eye.  Because Keira was the donor TTTS twin, she was much smaller and at higher risk for brain damage in utero. She is doing great now, with only slightly delayed motor skills. Mairin, however, is significantly behind in her motor skills.


The twins’ parents worry for their girls, as there are concerns around their brain abnormalities. Still, “there are worse things than limitations.” They find that the girls compensate for their limitations in other aspects. They are happy girls with a loving family. While there have been such big worries for these sweet girls, they have proved to everyone just how strong they are.


Stories by Angela Stephen-Dewhurst

Nicolas' Story

Images Captured By Studio 9 Photographics

This is Nicholas.  He loves playing with the computer, reading books, and he loves cars.  He is an inspiration to his family and those who know him.He has taught them that “hope is everywhere every day.”

Nicholas has been diagnosed with Developmental Delay, Seizures and Hypotonic (meaning that he has very low muscle tone, and is not strong enough to participate in regular activities).  It was discovered that he has low muscle tone after he was born, but at that time, the enormous affects were not known.  The full diagnosis came at six months old.  His parents were in disbelief that there was something wrong with their sweet baby.

Nicolas spent so much time in the hospitals that close relationships

with many doctors and nurses were made.  At seven years old, the family was able to be home for Christmas for the first time.  Now, with the help of specialized professionals, their lives are functioning normally.  Nicholas is a happy boy who is always smiling.  His seizures are under control with two medications that he is taking for this condition.

Nicholas’ parents have a wish for him; to continue to develop and

progress.  They worry about his future, and they worry about who will take care of him when they are gone.  For now they are taking things one day at a time, doing all they can to help Nicholas’ conditions.  Their excitement continues with every goal or improvement he attains, regardless of how big or small it is!  Progress is progress.

Story by Angela Stephen-Dewhurst

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