Sadie's Story

Images Captured By Joanne Bos Photography
www.joannebosphotography.blogspot.com

Tiny Light Sadie is the sweetest girl you will ever meet. She always has a smile on her face and loves being around people. The nearly three-year old is happy to share laughter, cuddles, kisses and unconditional love.

As an infant, Sadie wasn't progressing as she should and when she was just over a year old she was diagnosed with Angelman syndrome, which is a neuro-genetic disorder caused by missing part of the 15th chromosome. It is characterized by intellectual and developmental disability and sometimes seizures, but also by frequent laughing, smiling and a happy demeanor. Doctors originally said Sadie would not speak and may not walk, but she is already accomplishing things they said she wouldn't. She is crawling and pulling herself up in her crib. Walking seems like it's just around the corner.

Tiny Light Sadie has a challenging road ahead of her, but she is determined in her therapy and has already reached many milestones most kids with Angelman syndrome do not. Plus, she has great support from her older twin brothers and her parents. Sadie's mother says, "I hope for my daughter that she has friends and people that care about her. I hope that Sadie loves her life. I believe she does already!"

Written by Karis Sengara

Jarome's Story

Images Captured By Cindy Moleski Photography
www.cindymoleski.com

After having three daughters, Tiny Light Jarome was a delightful addition to his mother’s life. 

Since she was 38 when she had him, Jarome had been tested for abnormalities while in the womb and she was told that her son was fine.  After birth, he joined his elated family at home.

It was after a serious illness at three months and at the insistence of his mother that doctors finally tested Jarome for Down syndrome a second time. His mother was devastated to learn that he had tested positive.  What followed was a difficult period for the family.  After grappling with alcoholism, Jarome’s mother achieved sobriety and she credits her son as instrumental in her recovery.  With unique understanding, he brings her the AA book on days that he sees his mother struggling.

Today, Tiny Light Jarome is in school full time and enjoys Spiderman, Toopy & Binoo, coloring and playing with his dog Ace.  He is loving and sweet and loves to give hugs and make his family laugh.  He doesn’t speak in full sentences but he makes himself understood!  Jarome’s mother says, “Every day I thank God for Jarome, I am so lucky to have him in my life!”

written by Angela Funk

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

Tyler's Story

Images Captured By Caroline Ross Photography

www.carolinephotography.ca

Two and a half year old Tyler is a joyful little boy with a constant smile. His family calls him the "cuddle monster" because he's such a friendly little guy. This Tiny Light loves storytime. He also enjoys the outdoors, music and has a fondness for cheese.

When Tyler was born in 2009, he suffered from a lack of oxygen and was kept in the ICU for 14 long days. His parents thought the worst was over. But one day, after Tyler's dad left for a month long trip, his mom received devastating news. Their precious one year old son was diagnosed with cerebral palsy and a seizure disorder.

Understandably, it took some time for Tyler's family to come to terms with his diagnosis and challenges. He can't roll over, sit or stand unsupported, or feed himself. Also, Tyler is on three different types of anti-epileptic medications. Despite all that, Tyler makes strides every day, and always with a smile.

Tyler's mother admits she often worries about her son's future but she says her Tiny Light has shown her how precious life really is. "He is the love of our life and that smile takes the rough edges out of our daily struggles. Tyler is the angel in my life, our lives, and every life he touches."

Written by Catherine Urquhart

Fox's Story

Images captured by Anna Jones Photography

www.annajones.ca

Meet Tiny Light Fox. This little guy is happiest when listening to music or spending time in his bouncy chair. Though he is still so young, he has already demonstrated immense strength and bravery.

Twenty-two weeks into pregnancy, Fox’s parents were told that their son had a serious heart defect. He was diagnosed with transposition of the great vessels, DORV (double outlet right ventricle), coarctation of the aorta, VSD (ventricular septal defect) and an ASD (atrial septal defect). When he was born, the umbilical cord was wrapped around his neck twice and he was blue. He was immediately given treatment to stabilize him until doctors could fix his heart. At just five days old, Fox was scheduled for a four to six hour surgery but ended up in there for 11 hours. There were some major complications, but Fox continued to fight and he pulled through. Complications from the surgery included collapsed lungs, pneumonia, chylothorax, blood infection, pulmonary hypertension, pulmonary stenosis and arterial flutters. Fox was in the cardiac care unit for four and a half weeks but made it home just in time for Christmas.

Fox will face more surgeries in his future but his parents remain positive. As his mother says, “I'm so proud of my brave little man ... To see my son struggle and fight for his life has taught me a lot about what's worth fighting for. We don't know what the future holds for Fox but we know he will continue to fight.”

Story by Emily Harrison

Méryn's Story

Images Captured by Painted Light Photography

www.paintedlightphotography.ca

Tiny Light Méryn is a social butterfly who loves making others laugh. She especially enjoys going on “parade” through the mall in her stroller, blowing kisses to everyone. This cheerful and affectionate four-year-old always greets her friends with a hug.

Within minutes of her birth, Méryn’s parents, Melonie and Jeremy, found out their baby girl had Down syndrome. Then doctors discovered two holes in her heart. The ventricular septal defect closed on its own, but the atrial septal defect is still being monitored to see if a stent will eventually need to be put in. Méryn has had several other medical complications, including chronic sinus infections and pneumonia, but every year, this strong little girl keeps getting better.

Méryn is very bright. While she can’t speak clearly yet, she understands both French and English. She is an expert on her iPad and she cherishes all kinds of books. This September, she will start kindergarten. Her mom and dad expect her to go on to post-secondary school and find a fulfilling career.

As the youngest of four children, Méryn is surrounded by so much love.  With her beautiful spirit and determination, she is an inspiration to everyone.  This Tiny Light has changed her family’s lives for the better. “We have learned what it means to truly love unconditionally. I know everyone says they do, but this experience makes you look at your love in an entirely different light. Méryn lives as we all should, enjoying each and every day!”

Written by Elaine Yong

Chloe's Story

Images Captured By Alana Couch Photography

www.alanacouch.com

Meet Tiny Light Chloe. This sweet girl was born in the Philippines and moved to Canada when she was just a few months old. Chloe is a very loving baby who brings immense joy to her parents. She enjoys listening to music, especially Twinkle Twinkle Little Star, and loves Dora the Explorer! Chloe is growing quickly…she is active and energetic and is just starting to walk and talk.

Chloe was born with Down syndrome and an atrioventricular septal defect (AVSD). When she was two months old, she underwent her first surgical procedure, a patent ductus arteriosus ligation. Two weeks after arriving in Canada, she had a bad cough and was taken to the emergency room. It was then that her parents found out she needed to go in for another urgent open heart surgery. It came as a complete shock because they were told by doctors in the Philippines that she would not require another surgery until she was two years old. In contrast, Canadian doctors provide this corrective surgery before six months of age.

These are challenging times for Chloe’s parents, as they are new to this country and are facing this situation alone. However, they are proud of their daughter and are hoping and praying for the best for her future.

Story by Emily Harrison

Tristan's Story

Images Captured by Squishy Prints

www.squishyprints.com

Meet Tiny Light Tristan.  This handsome 16-year-old is smart, funny, and courageous.  He is eager to learn and has developed a passion for cars, world history, and geography.  He enjoys classic rock music, and saw his first two live concerts this year.  Tristan likes to spend his free time reading, going out for dinner, and going to movies.  He has already travelled to ten different countries, and has even gone parasailing!

When Tristan was five years old, he was diagnosed with Duchenne Muscular Dystrophy.  Since then, he has slowly lost all ability to perform any function that requires muscle use.  He has already been through two major surgeries during which he demonstrated immense courage and never complained.  It has been extremely difficult for his family to watch him go from being able to do things independently to requiring full support.  This, of course, was hard for Tristan, too.  In his father’s words, “As he was
losing the ability to do certain things, his wonder became replaced with fear and it is hard for us all to continually go through the changes.”

With the help of care workers, Tristan’s family will continue to support him as he gets older.  He will be able to get a job that requires talking and possibly computers.  Recently, he has expressed an interest in broadcast journalism so his family is trying to set up some interviews for him to meet people currently working in the field.  Since his diagnosis, Tristan’s family has gone to great lengths to allow him to experience as much as possible.  His father says, “I just want him to live - really live - without
being scared all of the time. I want him to be proud of the great and amazing guy that he is.”

Story by Emily Harrison

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