Mariyah's Story

Images Captured By Aspectus Photography

www.aspectusphoto.com

Tiny Light Mariyah has been defying the odds from even before she was born. Now, nothing can slow down this curious one-year-old who tries so hard at everything and smiles through all of it.

When mom Shama started having contractions at 23 weeks gestation, doctors said the baby’s chance of surviving the delivery was only 2%. Mariyah weighed just 507 grams at birth, and was immediately rushed off to the NICU. She survived but faced several life-threatening battles over the first six months of her life. This preemie suffered a brain bleed, bleeding in her cerebellum, she had heart surgery to close a duct (PDA), stomach surgery to remove adhesions from necrotizing enterocolitis, numerous bouts of infection, chronic lung disease, and one scare of meningitis. Through it all, Mariyah remained a feisty little baby, always kicking, grabbing and pulling at her wires and tubes.

Though parents Shama and Irshaad were told their baby girl would likely be

severely disabled because of the brain bleed, Mariyah continues to develop right on track for her adjusted age. The left side of her body is weaker, but that doesn’t stop this princess from getting what she wants. She is pulling to stand and walks with help. By her next birthday, she should be like any other two-year-old.

This Tiny Light never gives up. Even in the darkest days when everyone thought

she would not make it, she kept fighting. “In one year, Mariyah has been through

more than my husband and I have been through in our entire lifetime. She has given everyone who knows her a reason to believe, and provides us with a daily reminder of how fortunate we are in life.”

Written by Elaine Yong

Hunter's Story

Images Captured by Plus One Photography

http://www.plusonephotography.com/

Tiny Light Hunter is a happy eight year old boy who constantly inspires his loved ones, especially his mother Rachel and sister Jade. Hunter's smile and laughter are contagious, as is his enthusiasm for life.

Hunter's challenges started as a newborn, when he was having as many as 20 seizures a day. At just eight weeks, he was diagnosed with a seizure disorder and placed in an induced coma to help control the seizures. Five weeks later he was released, with doctors delivering the heart-breaking news that he would never meet "normal" milestones.

For Hunter's mother Rachel, the prognosis left her in disbelief, and wondering, "Why me?" But over time, she has learned to take one day at a time and focus on Hunter's happiness. Despite having epilepsy and global developmental delay, Hunter can now crawl, sit on his own and walk with assistance. He loves swimming, going on a swing and watching fireworks.

Hunter is still non-verbal, unable to feed himself and requires a wheelchair. Fortunately, friends and family have rallied together in support of this Tiny Light. And with their ongoing help, Hunter's mom believes her son will remain happy and healthy, and continue to inspire everyone he meets.

written by Catherine Urquhart

Jonathan's Story

Tiny Light Jonathan is a firecracker who is always smiling and laughing, even when he’s not feeling his best. This two-year old is a big flirt who enjoys being social with people, but his favourite buddy is big sister Kylie. He absolutely adores hanging out with her; he follows her around the house trying to touch her and pull her hair.

Parents Darlene and Roger only found out their little son had two congenital heart conditions, Tetralogy of Fallot and atrioventricular septal defect, and Down syndrome in the first week of his life.  Jonathan spent six weeks in the hospital before he went home. At three months, he had his first heart surgery. Then he had another procedure at nine months, and a major operation at 15 months. All three times, he had serious complications, which meant lengthy hospital stays. “Watching our child suffer has been the hardest things with this journey we have been on.”

Now, Jonathan is thriving. He is very busy scooting around on his bum, exploring the house. He enjoys socializing with other children at his Infant Development Program playgroup. Jonathan especially loves eating – soups and spaghetti are his favourite.

This Tiny Light will require a couple more open heart surgeries as he grows up, but this family has just gotten stronger with every obstacle. “When things are at their worst, there is always hope and things will get better. You can’t imagine how much joy your child will bring you. The future is full of possibilities.”

Written by Elaine Yong

Aiden's story

Images Captured By Amber Light photo and design

http://www.amberlightphoto.com/

Four year old Aidan is a happy little boy who finds joy in even the simplest things in life. This Tiny Light is known for his genuine laughter, which is rather contagious. He loves dancing to music, playing with his iPad, and going on nature walks. Aidan also has an incredible sense of direction and an amazing memory for places he's been before.

After Aidan was born, he developed more slowly than other kids his age, but still managed to reach all expected milestones. Then, at age two, his parents Christine and Spencer noticed his speech was regressing. It eventually disappeared altogether and Aidan lost interest in his surroundings and other people. Following several examinations, Aidan was diagnosed with autism.

Over the past two years Aidan has started making verbalizations and can now use pictures to communicate. Still, he has motor issues and sensory deficits, which have resulted in him eating just 10 items. With continued therapy, his parents are hopeful that Aidan will continue to make progress.

In September, this Tiny Light will begin classes at a special needs kindergarten - an important milestone for Aidan and his loved ones, who have grown closer during the challenges of the past four years. As Aidan's mother Christine notes, her son has taught them what's important in life and to live in the moment.
written by Catherine Urquhart

Brooke's Story

Images Captured by Matt Brennan

www.matt-brennan.com

Meet Tiny Light Brooke. She is a creative young girl who enjoys singing, dancing, drawing and reading. She also has an amazing spirit, which is demonstrated through her cheerleading.


At age six, Brooke was diagnosed with Childhood Epilepsy. Her disorder is characterized by absence seizures; seizures that cannot be seen, but are frequent. Her future with the disorder is uncertain as medical professionals do not know whether or not she will grow out of it. One of the most difficult things her family has had to accept is that the disorder is out of their control. To cope with this, they have learned to stay positive and fuel their energy and love towards Brooke.


Brooke’s parents hope that their Tiny Light will have “...her own dreams, no matter how big or small they are.” Every day they encourage her to be strong, smart and brave. Their dream is that her disorder “...never holds her back from living her life the way she wants to.”


Brooke’s disorder has brought her family a lot closer and allows them to see how much they are all loved by one another. Her parents admit that “not all of [their] days are good,” and that they “...will never be able to forget Brooke has this disorder.” Their focus remains on the positive things, and they remind other parents dealing with similar diagnoses that “...it is okay to have an off day; it is okay to feel sad, just as long as it isn’t all the time!”

Meet Jamie

Images Captured by Thibodeau Designs Photography

Meet Tiny Light Jamie!  This sweet two-year-old has an amazing ability to make people smile.  She loves playing with her cousins and spending time with her grandparents.  Jamie has her Daddy tied tightly around her finger!

When Jamie’s Mom was 20 weeks pregnant, it was discovered that Jamie has Hypoplastic Left Heart Syndrome.  This means that the aorta and left ventricle are very small, and that the aortic and mitral valves are either too small to allow sufficient blood flow or are closed all together.  As blood returns from the lungs to the left atrium, it must pass through and atrial septal defect to the right side of the heart.

Jamie’s parents were devastated at the diagnosis of their baby.  Still, they knew that this was their child, and they loved her regardless of any issues that she had. Jamie’s parents have had the hardest time seeing their sweet girl after surgeries, hooked up to machines. But they remind themselves that it’s all to help Jamie.

Jamie’s parents encourage other families with ‘Heart Babies’ to live life day to day with their child, keeping their heads up.  “They may be ‘special’ but they are your ‘special’ child.”

Story by Angela Stephen-Dewhurst

Benjamin's Story

Images captured By HRM Photography

Meet Tiny Light Benjamin!  A mighty trooper!  Ben brings love and joy to those he meets.  Ben gives amazing cuddles, and his mom looks forward to their “treasured cuddle time.” Ben is a curious boy who loves to play with trains, computers, puzzles and videogames.  Dubbed “Puzzle piece kid,” Ben can master puzzles right-side-up or up-side-down!  WOW!  Mom says, “Ben is Ben, and he is the best!”


Doctors have been left baffled at times, researching and testing Benjamin, looking for a fitting diagnosis that best describes his needs, as well as the treatment and support that will support his needs.  Multi-challenged, ADHD, global delay and autism spectrum are just a few of the diagnoses that have been discussed at this point.  However, there is no cookie cutter diagnosis that fits right now.


At just two years old, Ben has endured and struggled with epileptic seizures.  They are investigating his seizures with hopes that they will be able to suppress them in the future, but there is much fear and uncertainty of the damage that these seizures have already caused.  To have some control of the seizures and to ultimately be seizure free would be a gift. 


Heartbreaking struggles and the feeling of helplessness overwhelm Mom on a daily basis.  However, there are always reasons to celebrate his success and growth.  Despite the challenges Ben faces, he conquers each day and brings sunshine to those who know and love him.  Mom knows that Ben is in her life for so many reasons.  Ben’s journey has made his mom a stronger person, and has given her the firm belief to learn, read, educate yourselves, seek support and advocate for your child. 


Story by:  Leah Nahirnick

Jack's Story

Images Captured by Haley Lorraine

Meet Tiny Light Jack.  This three-year-old is a huge ‘Bob the Builder’ fan who loves going walks, playing and running in the park, listening to music, and, most of all, being in the company of others.


Jack was diagnosed at 18 months of age with Autism after his parents noticed that he was not responding to his name, was losing motor skills, and did not seem aware of the people and activities happening around him.  His parents, Allison and Craig, struggled with “not knowing how severe it may get....not knowing if ever he would be able to ride a bike, have friends and play like any other child his age... to still live in uncertainty as to his outcome.”  But they keep hope alive, take the good days with the bad, and have learned much about “patience, kindness, gentleness, and self-control...but ultimately true love.”


In their efforts to support Jack as best they can, his parents have learned so much, such as surrounding themselves with positive people, keeping hopeful, and never giving up.  They hope for Jack to have a chance at doing everything that other kids his age get to experience, such as going to school and having positive relationships with others.  Allison and Craig are inspired in their daily lives by a quote: “Love bears all things, believes all things, hopes all things, endures all things.” 

Miranda's Story

Images by Jenn Di Spirtio

When you look at Miranda and see her positive attitude, you would never guess the trials she has endured.  Multiple medical diagnoses and life circumstances should have knocked her and her mother, Tamara, down; instead, those same circumstances have created a world of opportunity. 

At birth, Miranda was diagnosed with a Posteromedial Bow in her left tibia and fibula, in addition to a leg length discrepancy. Her leg has been re-shaped and lengthened 7 cm through ten surgeries and an Illizarov Frame. As if that was not enough, Miranda’s dad passed away from a heart attack caused by Familial Hypercholesterolemia (FH) leaving Tamara as a single mom. Since FH is a genetic disorder, Miranda was tested and was found to have the same condition.  When Miranda was in grade six, she developed a kidney stone as a result of Hypercalciuria, a condition that causes excessive calcium excretion.  On the journey to finding out what was making Miranda so sick, she was also diagnosed with Pectus Excavatum (a Latin term meaning hollow chest) and scoliosis (where a person’s spine is curved from side to side).  She is currently awaiting an echocardiography to determine the severity of her newly diagnosed Mitral Valve Prolapse (the displacement of an abnormally thickened mitral valve leaflet into the left atrium during systole). 

Despite her multiple diagnoses, Miranda is fearless and continues to swim, write and enjoys art and school.  Her favorite subjects are Science and English. She has recently signed up for a yoga class with her friends, and is looking forward to it. 

Tamara’s advice to other parents going through the same thing is that even though you expect your child to be perfect and healthy, once you start down another path, you deal with it and it becomes part of your life. Miranda says that she finds it hard when everything seems to happen all at once and her illnesses start to interfere with her normal life.  She would like to let other kids with similar conditions know that it helps to talk to people, be around friends, and stay positive. 

Miranda is an inspiration to her mother because she is actually thankful for her many physical conditions! Because of her long stays in hospitals and exposure to the medical field, Miranda is medically inclined and has built a network of many types of people. “She was recently invited to speak to the nursing students at BCIT … to discuss her experiences and how nurses can have a positive approach towards their pediatric patients,” says Tamara. Perhaps one day, she will even become a pediatrician herself!

Miranda has written a guest blog for us it can be read here

Kayden's Story

Tiny Light Kayden could be Lady Gaga’s youngest fan. He’s not even 3 years old yet, but he would make the superstar proud – behind the beautiful smile, this little boy has a thing for shoes. Every time he goes into a store and sees shoes, he wants a new pair!

Kayden has already defied the odds. He has a very rare complex congenital heart disease called Right Atrial Isomerism. His heart has five defects including a large hole between the chambers, and he was born with no spleen. Kayden was diagnosed at the 20 week ultrasound, heartbreaking news for first-time parents Jennifer and Steve.  They were told only two children a year in Canada are born with this condition. The survival rate is 50%.

Though doctors are unsure of Kayden’s future, he is healthy right now. At 8 days old, he underwent risky open-heart surgery. Just a week and a half later, his mom and dad took him home. “He has been through so much but always has a smile on his face.” Kayden is on daily medication for his heart and to fight infection due to having no spleen. He will need another open heart surgery within the next year.

This Tiny Light is too young to understand his heart issues, but his mom and dad tell him he has a special heart. Kayden isn’t letting anything slow him down – he loves playing outside, or having fun with his toy cars and tricycle.  “I hope he lives a good life no matter how long it may be.”

Written by Elaine Yong