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

Elizabeth's Story

Tiny Light Elizabeth is a spunky little three year old who has a smile for everyone she meets. Her determination and feisty spirit has allowed her to already overcome so many obstacles. Elizabeth loves reading, music and dancing. She has an incredible memory and learns things quickly.  Elizabeth is also quite opinionated and independent, which often results in hilarious clothing combinations and interesting arguments, including why she can't walk her imaginary friend home when she's supposed to be going to bed. Elizabeth often tells people her name is “Princess” and her mother says, “she embodies that personality type fully!”

Following a routine ultrasound, Elizabeth's parents were told that their daughter had a complex, congenital heart defect. She was born with a hypoplastic (small and underdeveloped) right ventricle, tricuspid atresia (a missing tricuspid valve) and a ventricular septal defect (a defect in the wall dividing the left and right ventricles).  

At 3.5 months, Elizabeth underwent her first open heart surgery to have the first of a two-step repair and in March of this year, she received the second and final step. Some complications resulted in a three-month hospital stay, but now Elizabeth is home and healthy. She will not require additional surgery until her teens or early twenties, when she will receive a heart transplant.

While the journey has been difficult for Elizabeth's family, they have learned to be grateful for every moment they have with her. Her mother says: “She has helped me find joy in simple things, she brings light and happiness to all situations. Elizabeth's life is an awesome testimony of God's power and grace and being able to share that with others is a privilege.”

Story by Emily Harrison

Owen's Story

Images Captured By Jamie Allport Photography

Tiny Light Owen is a happy little guy who loves making his mommy and daddy smile. He enjoys holding toys, saying the few words he has learned, and holding up his good leg so his parents can “eat it”. He has surprised everyone with his strength and determination and continually proves doctors wrong by learning to do what they say he will never be capable of.

Owen was born in March of 2011 in severe respiratory distress. He spent the majority of his first year in the hospital and was finally diagnosed in March 2012 with CHARGE Syndrome, a rare genetic disorder. CHARGE Syndrome consists of a wide variety of birth defects that vary depending on the individual. “C” stands for coloboma of the eye (a hole in one of the eye structures), “H” for heart defects, “A” for atresia of the nasal choanae (a blockage in the back of the nasal passage, caused by abnormal bony or soft tissue), “R” for retardation of growth and/or development, “G” for genital and/or urinary abnormalities, and “E” for ear abnormalities and deafness. Owen has overlapping skull plates, lower set ears, choanal atresia, narrowed eardrums, an atrial septal heart defect, laryngomalacia (weak cartilage), a small trachea, larynx, and windpipe, as well as hydronephrosis of his kidney (water in the kidney), umbilical and inguinal hernias, and hip dysplasia.

With the exception of the odd surgery or feeding tube complication, Owen is doing well. Most children with CHARGE Syndrome don’t survive their first year, but Owen is two years old and continues to grow stronger. He has recently learned to sit on his own for up to 40 seconds! While the future is uncertain and more challenges are likely to arise, Owen’s parents remain hopeful. Problems can arise at any time and even the common cold can cause major complications. While there have been many moments that have been difficult and scary, they are thankful for every day they have with their son. As his mom says, “He is perfect in every way and I know I wouldn’t trade a second of this journey for any other.”

Story by Emily Harrison

Isabelle's Story

Meet Tiny Light Isabelle. This sweet five year old enjoys the simple things in life and loves being around people. Her favorite activities include blowing bubbles, playing with balloons, throwing and kicking a ball, and painting. She also loves playing with her dog Keida and going to kindergarten.

When she was born, Isabelle’s parents were surprised to find out their daughter had Down syndrome. They knew that having a child after the age of 40 was risky, but the pregnancy had gone smoothly and they were assured by their doctor that everything appeared normal. Isabelle spent the first month of her life in the hospital while her mother spent hours traveling back and forth from the hospital to their home to help support Isabelle's older sisters.

 Her parents are concerned about their daughter’s health, social skills, and ability to learn, but Isabelle has proven that she is capable of doing some amazing things. Sometimes her parents worry about her progress in a particular area, but then she’ll surprise them by overcoming yet another obstacle. She has proven time and time again that her diagnosis won’t stop her and her parents hope that with time, she will gain independence and live a happy and fulfilling life.

 While their lives have changed and challenges continue to arise, Isabelle has had an incredibly positive impact on her family. “We have reached milestones together, both successes and failures, which all bring us closer as a family. That's really what it's all about....loving each other for what makes us different. Isabelle reminds us of that every day!”

Story by Emily Harrison

Rhiannon's Story

Images Captured by InView Images

Tiny Light Rhiannon is a delightful, enthusiastic six year old who doesn’t
let anything slow her down. She loves colouring, playing ponies, and riding
her bike. She also enjoys her therapeutic riding lessons, playing hide and
seek, and listening to stories at bedtime. Despite her daily struggles,
Rhiannon has demonstrated an incredible ability to adapt and cope with any
challenges she may face, while still maintaining her cheerful demeanor.

When Rhiannon was born, her parents’ tears of happiness and pride quickly
turned to shock and anguish when they realized their daughter wasn’t
breathing. The doctors were able to resuscitate her, but this was only the
beginning of a series of obstacles for her to overcome. Her motor
development is significantly affected and she also has hypotonia, asthma,
eczema, a speech impairment, and difficulties with her social development.
While doctors have determined that Rhiannon has a neurological condition,
she has not yet been diagnosed. Her family is currently awaiting results to
determine whether she fits the criteria for Sotos syndrome, a rare genetic
disorder.

Not knowing their daughter’s diagnosis has been frustrating for Rhiannon’s
parents but they are relieved that doctors may finally be getting closer to
an answer. They have learned to appreciate even the little achievements and
have an immense amount of pride in what their daughter has accomplished so
far.

Story by Emily Harrison

Emma's Story

Images Captured by Captivating Photography by Sarah West

Tiny light Emma is a sweet six-year old who loves to dance like a
ballerina and play with her Lalaloopsy dolls. She is very artistic and
enjoys colouring and doing crafts. While she had a challenging start to her
life, she has shown incredible strength and brings joy to those around her.

At 32 weeks gestation, Emma was diagnosed with a right congenital
diaphragmatic hernia. Her diaphragm did not close while in utero, allowing
her liver and bowels to rise into her chest cavity. This compressed both of
her lungs and pushed her heart to the left. Emma’s parents were told that
if their daughter made it through birth, she would have only a 10%
chance of survival. After three days in the NICU, she underwent
life-saving surgery, which was a success. However, a subsequent
procedure when she was 13
months old caused a bit of a scare. A doctor gave her too much sedation and
they almost lost her but tough little Emma bounced back with no side
effects. In addition to her CDH, Emma also has pectus excavatum, which
causes her chest to appear caved-in (due to abnormal growth of her ribs and
sternum). This will be repaired when Emma is in her teen years.

Emma still struggles to gain weight and needs the help of a feeding tube.
She is medically fragile and her immune system is compromised. Emma’s
future is unknown, as every individual born with a CDH is different. There
is a risk that she may re-herniate, have more difficulties with her bowels,
or develop scoliosis, but her parents stay positive and choose to focus on
what is best for their daughter.

Story Emily Harrison

Alyssa's Story

Images Captured By ​Little Star Photography
www.littlestarphotography.ca

Meet four-year-old Alyssa. This extraordinary little girl has a smile that lights up a room and she has a big heart. She is compassionate and caring and gives the best cuddles. Alyssa enjoys dressing up (especially in her monkey costume), watching the Big Comfy Couch, playing with dirt, sand, or Play-Doh, riding her bike and, of course, eating!

Alyssa was born healthy, though she suffered from severe gastrointestinal reflux and colic in the first few months of her life. In addition to her health issues, Alyssa’s parents soon realized that her development was not as it should be. She wasn’t connecting with them, looking them in the eyes, or cooing and babbling. She wasn’t holding her head up when she was on her tummy, couldn’t roll over, and wasn’t attempting to crawl or play with toys. When Alyssa was 10 months old, she started seeing developmental therapists and physiotherapists, all of whom were concerned. She underwent testing (urine samples, blood tests, CT and MRI scans) but everything came back normal so she was diagnosed with global developmental delay.

Global developmental delay affects between five and ten percent of the childhood population and most children, including Alyssa, have impairment in all of the following domains: fine motor skills, gross motor skills, speech and language, cognitive skills, and social and emotional skills. Alyssa continues to show progress but is still completely non-verbal. She can walk with some assistance, ride a tricycle, eat a few things on her own, and is beginning to overcome her severe anxiety that arises in certain situations. She is gaining more and more independence every day, but it is unknown how severe her delays will be as she grows older. Also, In February of this year, Alyssa started having seizures and is currently undergoing testing to determine what may be causing them.  

It is extremely difficult for Alyssa’s parents to see their daughter surrounded by other children because it makes her delays so apparent; however, watching her try to communicate and seeing how hard she works to learn new things is inspiring. Her mother, Kathryn, is thankful for the great people she’s met since her daughter’s diagnosis. “I know now that no matter what life throws at you, no matter how bad it gets, as long as you have your family, or people you love around to share it, nothing else matters.”

Story by Emily Harrison

Noah & Daxton's Story

Images Captured by Craig D. Photography
www.craigdphotography.com

Meet Tiny Lights Daxton and Noah. These little troopers love being outside, playing in the park, and going for car rides. Though they are very active and enjoy wrestling with each other and chasing their cat around, they also love cuddle time. When they aren’t looking at books, playing with their cars, or colouring, they are probably busy being “Mommy’s special little helpers.”

Both boys were diagnosed at birth with myotonic dystrophy, a form of muscular dystrophy that makes their muscles weak and also makes it difficult for their muscles to relax after contraction. Their diagnosis wasn’t surprising to their parents, as their mother has the same disease. These boys need to work so much harder to reach their major milestones, including crawling, walking, and talking. They are both receiving physiotherapy, occupational therapy, speech therapy, and soon will start developmental therapy. Daxton has even started preschool!

Watching them hit their major milestones - often long overdue - has been incredible for their parents. “The anticipation builds up so much that it makes it that much more special!”. While Daxton and Noah may be limited in what they can do, they don’t let it bother them. These Tiny Lights bring incredible joy to their family. “While they may be tiny, they light up our entire world.”

Story by Emily Harrison

Nash's Story

Images Captured By Rhonda DeMone Photography
www.rdphoto.ca

Tiny Light Nash has proven to be quite a fighter already, even though he’s just over a year old. He loves to dance, play with his trucks, and reading books. He also enjoys cuddling his mom and riding on his dad’s shoulders.

When Nash was just nine days old, he was diagnosed with posterior urethral valve disorder (an obstructive developmental anomaly in the urethra and genitourinary system of male newborns). He was admitted to the NICU and was scheduled for surgery the following day, but it was cancelled when they realized he had gone septic. After three weeks of treatment, Nash was healthy again and underwent the surgery, which was a success. Unfortunately, a follow-up renal scan showed that Nash’s right kidney was in renal failure. Over the next few months, Nash passed mucus blockages when he urinated, each one feeling like he was passing a kidney stone. After passing a total of 33 blockages in only 3 months, doctors decided to remove his kidney.

It was extremely difficult for Nash’s mother, Deahna, to put her son’s health in someone else’s hands and just wait to see how things would turn out. However, since his surgery last July, Nash has been doing extremely well. In February, his parents were told that as long as he avoids infection, he should not need a kidney transplant within the next five years. As he gets older, however, his chances of needing a transplant increases.

Her son’s strength is an inspiration for Deahna. “Nash inspires me everyday to wake up and live each day to its fullest. He hasn't given up so why should I?  I try to look past the what ifs and take it one day at a time.”

Story by Emily Harrison

Josh's Story

Images Captured By Lisa Marie Photography
www.lisamariephotography.ca

Meet 12-year-old Josh. This Tiny Light loves to play video games and is fantastic with computers. He has a wonderful sense of humor, a great imagination, and he excels at drawing and reading. Josh is smart, affectionate, and brings joy and laughter to those around him.

After almost a year of recovery and removing many drugs from his system, Josh has improved, but still has a ways to go. The intrusive OCD thoughts still creep in periodically, which is difficult for Josh to deal with; however, he is now back at school and able to go out in public again. Josh’s mother, Jodi, is fighting hard to increase awareness of PANDAS and hopes that Canadian doctors will soon be able to help Canadian families, as receiving treatment from the American doctors is very costly. It has been a long road for the whole family, but they will continue to do whatever they need to do to help Josh reach his full potential.

At age three, Josh was diagnosed with autism. He started an early, intensive behavioural program and made great progress. He was attending regular classes, getting straight A’s, and enjoying life. However, in November 2009, Josh’s behaviour suddenly changed overnight. He suddenly displayed symptoms of obsessive-compulsive disorder, anxiety, worries, and rages. After years of progress, he regressed to the level of a three year old. After a long, tough fight to get some answers, a doctor they hired from the US finally diagnosed him with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). This is a disease in which a strep infection reaches the brain, causing neurological symptoms.  Canadians doctors do not have a working knowledge of this condition, so Josh’s parents had to look for help south of the border. Josh received an IVIG (intravenous immunoglobulin) treatment, in hopes of maintaining adequate antibody levels. His family is also seeking help from a homeopathic doctor from Australia to pursue additional treatments.

Story  Written by Emily Harrison