Kathryn's Story

Images Captured by Jennifer Gilbert Photography
www.jennifergilbert.ca

Kathryn

Ten year old Kathryn is a bright little girl who loves school and her seven year old brother Geoff. Her favorite things to do include playing with friends, piano lessons and swimming.

It's been nearly five years since Kathryn's family received the devastating news that she had stage four neuroblastoma. A year of intense treatment followed, including surgeries, chemotherapy, two stem cell transplants and 12 rounds of radiation. For 17 months she was in remission, until the cancer returned in September 2010.

Now, after 24 rounds of chemo there's no evidence of the disease. Despite that Kathryn underwent 10 rounds of radiation on two lesion sites. Also, she completed the immunotherapy protocol to help ensure the cancer doesn't return.

Kathryn's parents admit they sometimes fear they will lose her. But for the most part they focus on the positive, and pray that Kathryn will get all the happiness that life has to offer, like getting married and having kids. And for now they celebrate each day as a gift and live life to the fullest.

Story written by Catherine Urquhart

Odin's Story

Memories Captured by Affordable Child Photography ​

Meet Tiny Light Odin. He is a mirror twin to brother Griffen. He also has an older brother, Kingston, with whom he loves to play peek-a-boo!

At 15 weeks of pregnancy, Odin’s mother was kicked in her stomach and was sent to the emergency room with the very real possibility of losing her babies. It was discovered at this time that Odin would have several congenital heart defects. Once born, the full extent of Odin’s condition was able to be determined and he was diagnosed with heterotaxy (RAI), unbalanced atrioventricular septal defect, transposition of the great arteries, double outlet right ventricle, anterior aorta, pulmonary stenosis, univentricular heart, asplenia, laryngomalacia, non-rotational bowels and midline heart.

This Tiny Light has undergone two open-heart surgeries and continues to persevere. He has gained weight since his last surgery and is able to eat by mouth after being fed via an NG tube. This will allow him to be stronger for his third surgery, which is scheduled in a year’s time.

Odin’s parents state that the hardest part of the journey has been seeing the pain their Tiny Light has had to endure. “Not being able to push away the doctors and nurses and take off all the tubes and wires...” has been difficult. As they say, “Never give up hope on how strong your child could be...appreciate every little thing life has to offer because...they will teach you hope.”

Story by Stephanie Bond

Melia's Story

Memories Captured by Gabi Moeller Photography

 Tiny Light Melia loves music, playing, and exploring, and recently started taking her first steps.  She seems like any other active little girl, and yet she is not.  The crucial question for her parents is, “Why?”

Not long after Melia was born, her mom Stephanie and dad Neil noticed that when they picked her up under her arms she would arch her back and extend her legs.  A few months later, Melia started having spasms in her back.  As Stephanie says, “The spasms were so frequent it was hard to tell where one started and finished.”  The episodes resembled seizures, except that little Melia remained coherent during them.  She was admitted to her local pediatric hospital but test after test came back normal, even as she continued to have spasms.  The lack of a diagnosis was frustrating for Melia’s parents.  “When your child is in pain and distressed and is too young to understand what is happening your heart breaks, or at least mine does,” says Stephanie.  

Many months later, Melia still has back spasms, but no diagnosis.  She visits the pediatric hospital frequently and with the help of her caregivers and family, she is developing her gross and fine motor skills.  Stephanie and Neil say that it’s difficult to cope with the question marks around Melia’s health, but they remain hopeful that their Tiny Light will be able to live a happy and pain-free life.

​written by Jayne Akizuki

Aisley's Story

Memories Captured By ​Eye 58 Photography

​Tiny Light Aisley has an energy that cannot be matched. This bubbly, outgoing and funny almost four-year old little girl just keeps going, no matter how hard the road ahead. Now that her hair is growing back, you would never know she’s been fighting cancer for more than a year.

Aisley was diagnosed with acute lymphoblastic leukemia the week before Christmas 2011, just two months after welcoming her baby sister Emerson into the family home. Her parents Curtis and Alison were devastated. “We didn’t know what to expect. When you hear the word ‘cancer’, you think the absolute worst.” They had to uproot the family from their home in a small Alberta town and move to Calgary for Aisley’s treatment, which involved painful surgeries, bone marrow aspirations, and terrible side effects from the chemotherapy.

Now Aisley is in the maintenance phase of chemo. She takes daily medication at home with monthly hospital appointments. She enjoys going to preschool. She is a born performer who loves to dance and sing. Aisley is also a great big sister to Emerson. This Tiny Light has shown her family she is pretty incredible. “I hope one day she can visit a newly diagnosed little girl and tell her she was once in her shoes. And if she fights hard enough, she’ll be strong and healthy and ready to take on the world too. Although if I’m wishing for things, I’d rather there never be another little girl or boy diagnosed with cancer.”

Written by Elaine Yong

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

Troy's Story

Memories Captured by Kim Culbert Photography

According to his mom Jodie, Tiny Light Troy was an “extremely easy” baby and Jodie considered herself very lucky.  Shortly after he turned one, though, Jodie and her husband Brian began to get concerned.  He wasn’t talking, and he seemed different from other children, although his parents didn’t really know why.

Around the age of two, Troy started having grand mal seizures and that led to assessment and therapy.  It took a long time to get the seizures under control, and then when he was four years old, Troy was diagnosed with autism spectrum disorder.  “

We felt scared and unsure how to help him,” Jodie says, “but relieved that we finally had some answers and a direction to go in and services to access.”

Jodie describes autism as an invisible disability, one that can make life painful in a very unique and different way.   But she also considers Troy’s autism “an opportunity for us all to slow down and look at life differently.”  Troy is funny and loving, treats everyone he meets equally and takes great pleasure in other people’s smiles.  He loves playing on the computer, playing tag, swimming, and making forts.     “Our hopes,” says Jodie, “are that Troy is eventually able to capitalize on his differences and that others accept him for who he is.”

Written by:
​Jayne Akizuki

Henry & Ben's Story

Memories Captured by Brite Spot Photography

Meet Tiny Light brothers Ben and Henry. These Tiny Lights love playing with balloons, going for walks in their stroller and listening to music. They especially love getting tickled!

Both Ben and Henry were born with spastic quadriplegic cerebral palsy. Ben was born first and was diagnosed at about five months of age. Two years later, Henry was born and started showing similar symptoms at around four months of age. Ben and Henry are extremely dependent on others as neither child can walk, sit, talk, feed themselves or play. Both also suffer from vision problems, constipation and acid reflux.

Ben seemingly has more cognitive issues whereas Henry is more aware of his surroundings. The boys’ parents state, “The hardest thing is when we see other children or hear our friends talk about their children doing things we know our children will never do.” Mom Hayley recalled a tough moment breaking down in a park while watching two young boys run and play.

As a message to other families dealing with similar diagnoses, Ben and Henry’s family says, “I know it feels like you are alone and no one will ever understand what you’re going through but there are others out there and you will be surprised how much your family and friends will pull together to help you raise this child.” Hayley says her Tiny Lights are her inspirations. “They are not sad. They are extremely happy. Sometimes just looking at them all the problems I thought mattered really don’t.”

written by Stephanie Bond

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