Sevanna's Story

Memories Captured by Eye 58 Photography

Meet Tiny Light Sevanna. This sweet, caring six year old is adored by everyone who knows her. She loves to dance and sing and is a whiz at remembering song lyrics. She also enjoys going to school, swimming, colouring and playing outside with her siblings and neighbourhood friends. Despite the fact that she has been through so much already, spending nearly half of her life in the hospital, she continues to demonstrate her incredible fighting spirit and love for life. 

During a routine ultrasound, Sevanna's mother, Ricki, was told that she would be having a baby girl, but that something was wrong with her heart. When Sevanna was born, she was diagnosed with multiple heart defects: only one ventricle with a severe VSD (ventricular septal defect), pulmonary atresia, an ASD (atrial septal defect), a PDA (patent ductus arteriosus), L-TGA (left-side transposition of the great arteries) and a missing mitral valve. Sevanna’s lungs are also reversed (situs ambiguus) and she was born with no connection from her aortic arch to her lungs. What is unique about Sevanna's case is the positioning of her heart. It sits to the right at a severely tipped angle and is also upside down and backwards. 

She’s the only child in North America diagnosed with both hypoplastic left and right heart syndrome because the walls in her heart chambers have the characteristics of both sides (smooth and ripply walls). Her official diagnosis is “dual indeterminate hypoplastic left and right heart syndrome.” Unfortunately, there were also many complications during her heart surgeries, resulting in vision loss (she is blind in her left eye), kidney damage and moderate brain injury. She’s been diagnosed with epilepsy and ADHD as well.

Sevanna's health has been stable for over a year now, though she continues to be seen by many doctors and specialists. Within the next couple of years, she’ll require a valve replacement and, in her teens or early 20s, she’ll receive a heart transplant. For now, Sevanna will continue pursuing her dream of becoming a singer and dancer, singing with her mom daily and taking ballet lessons. 

Story written by Emily Harrison

Lukas' Story

Images Captured by Liz Bradley of elizabeth&jane photography 

Meet Tiny Light Lukas. This Tiny Light loves playing with his cars, watching the movie Cars and playing with his puppy. He really enjoys dancing and singing along with his favorite TV shows and country music.

Lukas was born with Tetralogy of Fallot, a congenital heart defect. He was diagnosed at just one week old. When Lukas was born he had a heart murmur that was loud enough for the doctors and nurses to hear with just a stethoscope. Lukas had a very large hole in the walls between the right and left ventricles of his heart. Fortunately, Lukas has only needed one surgery to date, when he was six months old. Lukas’ recovery was remarkable and just six days after the surgery he was able to go home with no medication except Advil for pain, which he didn’t even really need!

“We were terrified,” Lukas’ mom says. “Without surgery, Tetralogy can be fatal. Even with surgery there were no guarantees.” Lukas didn’t walk until he was 23 months old and has had some other developmental delays. Even though Lukas cannot carry on a conversation like an average child his age, he can answer questions and has learned so much. He can identify all his shapes, colours, numbers and letters, and is even spelling some words now. 

His parents’ biggest fear is that Lukas will need to undergo more surgeries and possibly be diagnosed with Autism Spectrum Disorder, which his older brother has been diagnosed with. However, his family hopes that “Lukas will get to live his dreams and make them a reality. Now that his heart is fixed he could do anything that a normal kid could do.” 

Story Written by Kelsey Walker

Lilly's Story

Meet Tiny Light Lilly. She loves jigsaw puzzles, colouring, reading, playing with sand and just relaxing while watching Treehouse TV. She always has such a positive attitude and is always in a good mood. Her parents say her smile and hugs are the best in the world. It’s hard to believe this happy little girl has been overcoming challenges since the day she was born.

Lilly was born at 30 weeks gestational age, and two months later her parents were told she had cysts in her brain due to a brain bleed. These cysts were removed quickly but Lilly’s parents were warned that the cysts may have caused damage and that their sweet baby girl could have Cerebral Palsy. When Lilly was 10 months old her parents noticed she wasn’t hitting physical milestones like other children her age. At her one-year check-up they were given the diagnosis they’d feared. Cerebral Palsy. They were devastated at first. They’d known it was a possibility, but were hoping for the best since Lilly was doing so well in all other aspects.

It’s been a long bumpy road but Lilly’s made incredible progress; she’s able to walk independently with the help of her AFOs (her super shoes). As well, Lilly requires glasses and must have Botox injections every four months, which her parents say is the hardest thing for them in all of this because they hate seeing Lilly in pain. The devastation they’d once felt upon hearing the diagnosis has all but faded now. Lilly’s parents feel blessed to have her in their lives, saying, “Since Lilly was born, our outlook on life has changed completely. What seemed important before has now little to no meaning at all. She gives us strength to fight even when we have no strength left. She makes us see the world through her eyes and life is so much better that way.”

Story written by: Adrianna Tailleur

Maclain's Story

Images Captured by H2 Photo

Meet Tiny Light Maclain.

Maclain is so happy, energetic and loving. He always puts his best effort forward and he is thrilled by every accomplishment he makes. He loves movies and dancing. Maclain loves to be in the water and have someone blowing bubbles at him. Maclain adores Mickey Mouse, Toy Story and playing with his brother. His favourite treat, like many kids, is chocolate!

This little Tiny Light was born in August 2007 at 29 weeks gestation by emergency C-section. It would save his life. At just four months old, his family was given the news that he was profoundly deaf. After his emergency delivery, and the death of his twin brother in utero, Maclain's family was devastated. They had no sooner come to grips with his hearing loss when they were told he had Severe Athetoid Cerebral Palsy. He would never walk, sit or feed himself. He would always need to rely on technology. 
His family deals with numerous therapies, appointments, funding requests, equipment fittings, and tries to figure out how to do normal things in an adapted way on a daily basis. Maclain's family were told that he would never be verbal. Now, against all odds, Maclain can count to 20, say his colours, ask for his favourite food and call out for his Daddy.

Maclain is now 6 years old. Although his Cerebral Palsy is still very significant, he has made great gains with his speech and is starting to get quite fast using his walker. Maclain's parents Brenda and Graham, and brother Chase are so proud that Maclain will be starting Grade 1 next year!

Story written by Kelsey Walker

Nathan's Story

Images Captured by CM Photo Art

Tiny Light Nathan brings sunshine and smiles to everyone who comes close.  He has a fighting spirit, and has so far defied all the predictions of his doctors.  Nathan’s adorable chubby cheeks, wide, cheering smile, and his happy coos soften the heart of everyone who meets him.

Nathan has interhemispheric arachnoidal cyst, agenesis of the corpus collasum, missing splenium, nystagmus, sun setting eyes, and low oxygen saturation.  He faces a battle every day to stay alert, feed well, and to stimulate his brain to the fullest so that he can grow and reach milestones.  His challenge is to keep feeding well, get enough oxygen, and to live each day to the fullest because he is quite the sleepy little boy.  

By four weeks old, Nathan had already undergone two difficult surgeries.  He came through like a champion, and continues to do better than expected.  He is being followed by a number of clinics, and has captivated many with his adorable and radiant personality.  His parents, Mark and Ronda, are amazed at the strength and spirit that Nathan has shown the world.  The family takes huge comfort from the support of their friends, family, and church congregation, who have been very supportive of their journey with Nathan.

He and his older brother are both a joy to Mark and Ronda, who cherish every day with their boys.  Nathan may have called NICU home for a while and has spent time in hospitals, but he is in his real home now.  His family is so thrilled to have their tiny light with them every day.  There is no sure prognosis for Nathan.  His mom says, "There are numerous concerns such as epilepsy, mild to severe mental challenges, developmental challenges, vision issues and feeding problems," but his parents are hopeful that Nathan will live a full and very happy life.

Story written by Andrea Lee

Riese's Story

Memories Captured by H2Photo Hope Hanson Photography

Tiny Light Riese is a little fighter who brings joy to her family with her bright smile. Riese is a happy baby who loves playing with her toys, listening to music and being sung to all day long. She especially lights up when she sees her funny big brother Chase.

At birth, Riese was diagnosed with Down syndrome, as well as tracheoesophageal fistula (a condition in which the esophagus is not attached to the stomach) and a heart defect (AVSD). At only four days old, Riese underwent surgery to repair her esophagus and at three months she had open-heart surgery. Due to her small size (six pounds) and complicated valves, the surgery was not as successful as the doctors had hoped and, as a result, a pulmonary band was put in place, which would allow Riese to grow. Two weeks after the surgery Riese was finally able to go home from the hospital, a wonderful day for her family.    

For Riese’s parents it was difficult to leave the birthing hospital without their baby daughter and then watch as she underwent constant IVs, hundreds of needles, and a myriad of tests. But most difficult of all was to hand over their baby to a surgical team — and just wait. However, these challenges have been made more bearable by supportive family and friends and by seeing the joy that their daughter brings to those around her. “Having our daughter and seeing how she has grown and watching her touch people's lives [has made] our worlds better,” says Riese’s mother. 

While Riese has to undergo a second open-heart surgery in the near future, her parents hope it will be the last. They look forward to watching her grow up with her brother, living a life filled with love and accomplishing her dreams.

Madi's Story

Memories Capture by Photography by Eiko
 

Madi is a very strong little girl who can put a smile on anybody’s face. Madi loves watching Baby Einstein, listening to music, swinging on her swing set, playing with musical toys, relaxing in her crib and going to school. Madi loves school!

Madi was born healthy and it wasn’t until she was 7 months old her family noticed changes. Madi was unable to sit up on her own unassisted without falling over. After visiting a paediatrician, it was clear something wasn’t right so a number of tests were conducted. A muscle biopsy, MRI of the brain, genetic testing and several other tests came back with no answer. However, Madi’s paediatrician noticed traits that lead him to test for Rett syndrome, a genetic mutation that causes neurological impairment. On May 22 2012, Madi’s test results for Rett syndrome came back positive.

Madi has been affected by Rett syndrome in every part of her body; she cannot walk, crawl or stand on her own. She also cannot say any words. Her family is very unsure what the future holds for this beautiful little Tiny Light. Mom Kalle, Stepdad Ryan and baby sister Camryn just hope Madi can make the most of her life and be happy.

Nevaeh's Story

Images Captured by D4 Photography

Tiny Light Nevaeh is always ready with a smile, a hug and a big beautiful
laugh. This spunky four year old girl has shown everyone that life is full of
love…all we need to do is get out there and live.

Nevaeh was diagnosed with Down syndrome at birth. Doctors were also
concerned about heart defects – atrial and ventricular septal defects – as
well as fluid in the lungs.  Though parents Melissa and Corey were
hopeful the heart would heal on their own, Nevaeh had to undergo
surgery at six months. Then at one year, this tough little girl had another
operation to correct craniosynostosis – a birth defect that causes the
sutures on a baby’s head to close too early.

Though the road hasn’t always been easy, especially dealing with
misconceptions about children with Down syndrome, Nevaeh is happy
and healthy. She loves to read books and mother her baby dolls. She is
especially good at drawing rainbows and enjoys breaking out the dance
moves with her younger sister. Communication is a challenge, but
Nevaeh knows over 200 signs.

This Tiny Light has a wonderful future in front of her and no matter
what path she chooses, her family will stand proudly at her side.
“Nevaeh is amazing. She has shown me that so many of us complain
and take things for granted. Enjoy the little things because we all know
it is the little things that make life worth living.”

Story Written by Elaine Yong

Eva's Story

Images Captured by Sharon Wright Photography

Tiny Light Eva always has a smile on her face. She loves playing peekaboo with her father, dancing around the house Gangnam Style, exploring new places, and munching on her eggs in the morning. Even when she’s not feeling well, she can be found kicking a ball around the house and being a big sister to Maddy.

Although Eva’s diagnosis of Down syndrome shortly after birth was a shock and has been an emotional roller coaster for her family, it never affected their love for her for a minute. Her parents describe her as “truly amazing, and the love of our lives.” Her two middle names, Maria and Charlene, honour her auntie and her godmother. She’s adored by her large family, who accept her as she is and feel lucky to have her in their lives.

Eva’s positive attitude inspires those around her. She sees life as an amazing gift, and loves and lives in the present every day. Her diagnosis has helped the family learn to focus on the important things in their lives, and Eva’s mom says her daughter can do anything. She won’t even be surprised if Eva wins a gold medal in the Special Olympics one day!

Story Written by Adris Fisch

Kaylee's Story

Images Captured by D4 Photography

Kaylee was born December 4, 2010 and was instantly loved by so many. She arrived weighing 7 lbs 9 ozs, with beautiful blue eyes and appearing happy and healthy.

At five months, Kaylee started having seizures and no longer drank her milk. Following a series of medical tests, her parents received devastating news. Kaylee had Leigh's disease, a rare neurometabolic disorder that affects the central nervous system, causing loss of motor skills and eventually death. Kaylee's doctors didn't think she would survive much longer than a year. Happily, she proved them wrong. Despite many days in hospital, this tiny light had much to live for, such as visits with her Great
Nana and Great Grampie and Grandma and Grandpa Detka. Thankfully, her loved ones surrounded her with much love and happiness. With her mom she'd bake cakes, sing and dance in her wheelchair or read and watch videos. And at the end of the day, it was daddy time!

Kaylee loved her first trip to the swimming pool. Sadly, it was also her last. Kaylee passed away at just two and a half years old. But she left her loved ones with many beautiful memories. Just days before she died, she laughed really hard and for the first time said "Mommy," treasured gifts for her family, who will miss her always.

Story Written by Catherine Urquhart