Kaylee's Story

Images Captured by Kristy McLeod Photography

Meet Tiny Light Kaylee, a spunky and bright five-year-old who is full of life and who loves with her whole heart. Kaylee enjoys music. She participates in a dance class and sings many songs from the radio. One of her favourite pastimes is baking with Mommy. Kaylee is a whiz with computers and computer games (iPod, iPad and Leapfrog). She’s also the toughest person her parents, Patricia and Barry, know.

On March 7, 2012, Kaylee crawled into bed with her mom for a morning snuggle. She had an odd rash on her wrists. The family doctor sent her for blood work and the next day they were rushed to the hospital. The diagnosis was aplastic anemia, a rare blood disease that causes bone marrow failure.

Since then Kaylee has had numerous surgeries, biopsies and weekly transfusions of blood and blood products. She has also done two rounds of immunosuppressive drug therapies. Depending on her health, she may need a bone marrow transplant. It took Kaylee a while to get used to the doctors and nurses and all the medical procedures.

Patricia says, “We just keep urging her on and asking her to be brave. She never gives up and just does what she needs to do next.” Despite all the procedures she’s been through, she keeps fighting and stays happy.

Story Written by Lori McLellan

Oliver's Story

Images Captured By Lori Waltenbury Photography

Tiny Light Oliver has a Congenital Diaphragmatic Hernia (CDH). A diagnosis such as this one means that a part of his diaphragm did not form as it should have, and the organs that should be found in his abdomen have migrated up into his chest. His family received this diagnosis when Oliver’s Mom was just 18 weeks pregnant, February 8, 2012, a day they will remember for the rest of their lives.

Oliver’s mom knew something was immediately wrong at her 18 week ultrasound. The ultrasound tech was making faces and called her colleagues in to look at the scan. They wanted to know how soon she would be seeing her OB. When they printed Oliver’s ultrasound photo, there was a big black spot in his chest, but his mother wasn’t told anything. When Oliver’s mom saw her OB the following morning, the doctor gave her the news. They suspected he had CDH, but it was possible it could have been a cyst. When Oliver’s condition was confirmed to be CDH, his family was offered the option to terminate the pregnancy, but his family was not willing to take away the 50% chance he had for life.

When Oliver was born, his lungs were unable to grow accordingly and his heart was being pushed over to the right side. His right lung (the lung that should be the largest) was about 30% smaller than it should be. Doctors knew that Oliver would not be able to breathe on his own at birth, he would need surgery to rebuild his diaphragm, and that surgeons would have to relocate the organs to their natural locations. Following the surgery, his lungs were given the proper amount of room to grow. However, there was no guarantee that this would work and that his lungs would function properly. After this, Oliver would still be faced with problems associated to CDH and his surgery, such as respiratory issues, eating and digestive problems, reflux and the possibility of reherniation.

 “We feel overwhelmed with all the love. It’s times like this when you can really see the quality of the people you’ve chosen to surround yourself wit, and we know now for a fact that we’ve chosen wisely. I am already so desperately in love with him. All his little squirms and kicks and punches, they’re these beautiful nudges from my little man telling me he’s here, he’s strong, and he’s going to be tough. He’s going to fight as hard as he can. Sometimes they make me cry but I love every one of them.” Words his mother wrote before

Oliver came Earth side. Some CDH survivors are lucky. Once they are past all initial struggles, they can live relatively normal lives. By the age of 9 years old, most issues resolve. All his family wanted was to be able to bring him home, for him to play with his sister, to roll, to crawl, walk, and run much like any other child.

Oliver’s mom shares their journey through CDH on a blog http://tawesson.wordpress.com/ You can visit the blog for more information and updates on Tiny Light Oliver.

Story written by: Kelsey Walker

Francesca's Story

Images Captured by Valerie Pyke Photography

Tiny Light Francesca is a happy, calm, and pure soul. She loves lights, music and being outdoors. She has a personality and aura that make you want to be around her.

When Francesca was just five months old, her parents were shocked when she was diagnosed with Pallister-Killian Syndrome, especially since all of Francesca's prenatal testing came back normal. Pallister-Killian Syndrome is an extremely rare genetic disorder. Characteristics include mental and physical delays. Most children with this syndrome do not walk or speak. Other health issues can include hearing loss, loss of sight, feeding issues, heart problems, respiratory complications, seizures, complications with digestion and elimination, and muscle contractions.

Francesca's first year was difficult on everyone, between being in and out of hospital and learning to adjust to a new "normal." Now things seem to be evening out for the family, and they are enjoying being happy at home. Francesca's parents say they believe that she was given to them for a reason. Her future is unpredictable so they just soak in the "now" and savour all the moments. Their main goal is to make sure she feels happy and loved, and it's clear they're doing a great job at that.

Story written by: Adrianna Tailleur

Rafe's Story

Tiny Light Rafe lived as a typical little boy until he was four years old when, as a result of a high fever, he experienced a seizure. He and his parents could never have expected that over the next couple of months, he’d experience seizures with increasing frequency until they became daily events.

After Rafe went through an MRI and other testing, a number of hospital stays and lots of anxious waiting, his doctors were eventually able to diagnose him with child-onset generalized myoclonic seizures. It’s unclear whether he’ll outgrow this disorder, but Rafe has been placed on medication that will hopefully control his seizures and enable him to live a more stable life.

Rafe’s mother Shauna tries to keep his life as normal as possible. She says, “I don’t want the seizures and fear of the next one to keep him from living life to the fullest.” And despite the changes in his life, Rafe continues to do just that. He loves doing gymnastics, bike riding, swimming and playing basketball and especially loves playing Super Mario Bros. with his dad. While his disorder makes life more challenging for his family, his smile and sense of humour bring joy and make all the hard times worthwhile.

Story written by Angela Funk

Images captured by Sarah Spring Photography

Teddy's Story

Teddy is a happy Tiny Light who brings lots of joy to everyone around him. He loves hugs and kisses with his mom and has the best laugh. Three-pound Teddy and his two-
pound twin brother Sammy came into the world at 28 weeks gestation. When he was six days old, Teddy contracted a staph infection while in the NICU and, as a result, his bilirubin level spiked to dangerously high levels. This resulted in damage to the basal ganglia part of the brain, leaving him with cerebral palsy, profound deafness and cataracts, which led to his lenses being removed.

His parents were devastated and didn’t know the exact extent of his condition, as only time would tell. It’s been frustrating and overwhelming at times due to the enormity of his problems. They worry about how they’ll be able to cope over the long term.

Medically, it’s been incredible for them to see the technology that’s giving Teddy a better quality of life. He had a bilateral cochlear implant and is now able to hear. Hopefully, more medical advances will continue to improve his quality of life in other ways as well.

If Teddy’s lucky, he’ll be able to talk, walk and communicate. But his parents are prepared that he may be very limited in these aspects, so they focus on the joy they feel when he laughs or reaches a milestone. Teddy has many people in his corner who love him and are contributing to his cause. A dream for Teddy’s parents would be for him to say “Mommy” and “Daddy” and walk over to them and play with his twin brother and his seven-year-old brother.

Written by Lori Meers

Images captured by Forever Captured Photography

Hallie's Story

Six year old Hallie is a determined little girl who welcomes every day with a smile. She loves reading, school work, riding her horse during therapy, and playing with her dolls.

News of Hallie's impending arrival was welcomed news for the whole family. Shane and Heather already had sons Carter and Parker, so a little girl would complete their family. However, Hallie's birth did not go as planned. During delivery, her heart stopped and she suffered a lack of oxygen, resulting in a severe brain injury.

Hallie was not expected to live long after her birth, but she has amazed everyone with her fighting spirit. Despite having Cerebral Palsy, this six-year-old reads at a grade three level! She struggles to gain weight, and has difficulty using her limbs. Still, she perseveres.

While Hallie's parents are concerned about their daughter's future, they are also inspired by her progress. This Tiny Light was not expected to crawl, but now she is an active crawler. The Ganderton family hopes their little miracle continues to thrive, and remains both happy and positive.

Written by Catherine Urquhart

Images captured by Angie Chauvin Photography

Jerzen's Story

Tiny Light Jerzen loves playing outside in the sun or in the snow, watching Toopy & Binoo and the Bubble Guppies on TV, building with his blocks, playing with all of his Fisher-Price Little People, and doing puzzles.

When his mother, Julia, was pregnant with Jerzen, he was diagnosed with heterotaxy syndrome (a disease that effects the organs and usually the heart) and multiple congenital heart defects at a 22-week ultrasound. He also has asplenia, a medical term that means he has no spleen. On September 6, his parents met him for the first time but never got to hold him as he was rushed to the PICU right away. He had his first open-heart surgery when he was 16 hours old, and spent his first month of life in intensive care; this was just the start to his family’s journey. Jerzen had more check-ups than could even be counted and, at the age six months, Jerzen needed to have his second open-heart surgery. It was hard for all concerned but recovery time was much quicker this time.

Today two-year-old Jerzen has cardiology appointments every six months and regular check-ups frequently, but aside from that lives a very regular life. Jerzen loves Elmo and Mickey Mouse, playing outside, and his blankie. In the near future Jerzen will need to undergo another heart surgery.

His parents’ hopes and dreams for Jerzen are that, despite his condition, he will continue growing and have an everyday life with no more complications the way he deserves. It inspires his mom that at the age of two, Jerzen has been through so much, but he has pulled through and is so full of energy and is such a happy boy!

Written by Lori McLellan

Images Captured by Robin Smith Photography

Brooklyn's Story

Tiny Light Brooklyn loves to dance and play with dogs. She’s a whiz at using electronic tablets and really enjoys listening to music and watching Bubble Guppies.

At ten weeks of age, Brooklyn was diagnosed with a rare medical condition called PHACE syndrome. Every case of PHACE is different; Brooklyn’s case is characterized by a benign tumor wrapped around the back of her right eye, many malformed and/or missing arteries that lead from her heart to her brain and a central brain issue that causes dangerously high blood pressure. The malformed and/or missing arteries have caused Brooklyn to have several mini- strokes. The central brain issue that she suffers from doesn’t allow her to regulate her blood pressure and as a result, her blood pressure must be monitored daily. After numerous MRIs,

Brooklyn was also diagnosed with hydrocephalus (water on the brain), thinning of her corpus callosum (the grey matter that connects the two brain hemispheres) and two other anomalies that medical specialists are unable to explain.

Brooklyn’s parents say that the most difficult aspect of the journey is a feeling of helplessness and the inability to help Brooklyn. They say, “This battle is a pain that no parent should ever know.” Although there is not yet a cure for PHACE syndrome, Brooklyn’s family remains positive, saying, “Miracles happen every day — to us Brooklyn is not a child with PHACE, to us she is just our HERO.”

Story by Stephanie Bond

Images Captured by Melissa Avey Photography

Kaydence's Story

At only two months old, Tiny Light Kaydence had to be rushed to the hospital by her parents after she woke up vomiting and off in colour. Until this moment, Kaydence had been a happy, healthy baby.

After several tests, Doctors told Kaydence’s parents that she had Critical Aortic Cyanosis. Tiny Light Kaydence’s heart’s left ventricle wasn’t allowing proper blood flow. Doctors had a hard time stabilizing her, but after being transferred to Sick Kids Hospital in Toronto, they were able to do just that and performed a cardiac catheterization. Complications from this left a blood clot in her right leg, and Kaydence now needed blood thinners.

After being in hospital for over a month, Tiny Light Kaydence returned home, but after a routine hospital visit, tests showed that Kaydence was losing heart function. She was then diagnosed with Cardio Myopathy; her heart was five times the size of a normal baby her age. Medications work, but it is inevitable that Kaydence will need a heart transplant.

Mom, Nicole, says Kaydence is living as normal a life as she can, but “… it has been almost like a ticking time bomb.” Since this last diagnosis, Kaydence has also been told she has Turner Syndrome. This now two-and-a-half year old Tiny Light is really happy and full of life and energy. She loves to dance, and can make anyone smile. Her parents realize they have a long road ahead of them, but also realize that their daughter is a very strong and brave little girl.

Written by Valerie Bush

Images Captured by Sweet Exposure Photography

Kate's Story

Meet Tiny Light Kate. Kate was born in October, 2007, bringing much joy to her mom Julie, her dad Brian, and her older brother Jack. She appeared to be a normal newborn baby, but after nine months of age, she had to be brought into the hospital repeatedly because of severe illnesses. The Drury’s were given a diagnosis each time, but not one that explained why Baby Kate was serially ill or why she was increasingly unable to meet developmental milestones. It took three years for doctors to determine that Kate has Sideroblastic Anemia, B- cell Immunodeficiency, Periodic Fevers and Developmental Delay - SIFD, which is an extremely rare, recessive genetic mitochondrial disease. Knowing what it was that caused their little girl so much pain and suffering might have helped if there was a course of treatment based on that diagnosis, but Kate is the first child ever to be diagnosed with SIFD. It broke the Drury’s hearts to learn that there is no known way to fix their baby girl’s problem.

Kate has been a champion, helping doctors to learn more about SIFD, enduring many tests and illnesses. “She has shown incredible strength, perseverance and stoicism,” says Julie, who loves and admires her daughter’s toughness.

Knowing that Kate truly enjoys all of her healthy moments helps the Drury family live with the uncertainty of Kate’s day to day future. Kate loves playing in water, gymnastics class, and all things ‘Dora.’ Now five, she attends school and plays with the other children. Her love of water led the family to vacation in the Bahamas, thanks to the Make a Wish Foundation. She is learning sign language to cope with her deafness, and she eagerly makes new friends. She has lost her hearing and is medically vulnerable, but she lives each day as a gift and has hope that the next will be even better.

Story written by Andrea Lee

Images Captured by Annemarie Gruden Photography