Madison's Story

Tiny Light Madison loves playing with big brother Aaryn, who’s always good for a giggle. She loves playing with blocks and rings when she’s not looking at books or having fun rolling around.

Madison was born with Down syndrome and was diagnosed with type 1 diabetes at the age of 10 months. Madison’s parents’ first reaction to her diagnosis was, “So what does this mean?” They spent as much time as possible meeting with social workers, doctors and nurses and also conducted their own research in order to learn as much as possible about Madison’s diagnoses. Before they could take her home from the hospital, Madison’s parents had to learn how to give Madison two insulin shots a day and blood glucose checks five to six times a day.

Madison’s parents identified a number of great support systems for children with Down syndrome. They encourage other families in similar circumstances to get involved with associations, connect to other families and build a network of friends who will understand the struggles they may be going through.

Madison is currently undergoing occupational therapy and physiotherapy to work on her fine motor skills. Her perseverance and determination inspire her family. Her parents say, “Madison is a trooper; she just keeps going.” For them, her joyful spirit and endurance are the most amazing aspects of the journey. Although Madison’s future is uncertain, her family and friends will support her in whatever she chooses to do and they believe she has a wide open future ahead of her.

Story by Stephanie Bond

Images Captured by Petra King Photography

Haley's Story

Six-year -old Kaley is a happy little girl who likes music, books, her dollies and, perhaps best of all, this Tiny Light loves playing with her twin sister, Keira. When Kaley arrived, her parents learned that she had Down Syndrome and severe heart defects. At two months, she fought through her first open heart surgery. Then, at just four months, she had a heart block and needed a pace maker. By age one-and-a-half, Kaley underwent her second open heart surgery. It was during that procedure that her intestine was perforated. She was placed on life support, and spent the next year recovering. In all, Kaley has battled through 28 surgeries.

Having the twin girls separated during all those hospital stays was difficult for both girls and for Kaley's parents. Fortunately they can now enjoy doing things as a family. After all that Kaley has endured, she continues to be a very joyous and loving child. For the Biggar family, she is both an inspiration and their hero.

Like other parents, Brodie and Vicki Biggar have many dreams for their child. On that list ... the day Kaley will complete her schooling and graduate alongside her twin sister.

Story written by Catherine Urquhart

Images Captured by Jennifer Kapala Photography

Phoenix's Story

Meet Tiny Light Phoenix. She was born pink, healthy and beautiful, into a family full of love and laughter. Then suddenly, at exactly eight weeks old, Phoenix became fussy, then really fussy. Mom’s intuition told her that Phoenix needed help right away so she was taken to the ER. Mom was right. Not long after their arrival at the hospital, Pheonix' heart stopped. Thankfully, she was revived and flown to CHEO where it was determined she had Cardio Myopathy most likely caused by a virus attacking her heart, which was turning it into a big, mushy ball that pressed on her lungs. Phoenix was in grave danger. After a few weeks in CHEO ICU, she was flown to Sick Kids Hospital to be assessed for a heart transplant. Shortly after her arrival, Phoenix suffered cardiac arrest, and was down for 10mins. This led to her being the smallest patient ever to receive a Berlin Heart to support her until she received a heart transplant in August 2009.

Now, five years later, to meet Phoenix on the street, no one would know of her health battle. She is such a strong and vibrant little girl. She loves colouring, doing cartwheels, ice skating, dancing, and playing anything with her sister. She loves life and embraces new things weekly.

The future for Phoenix is complicated.  She takes anti-rejection drugs every 12 hours.  These drugs have done a good job keeping rejection away, but are highly toxic and come with many side effects.  She has suffered several pneumonias, and is at high risk for cancer and kidney failure.  She is currently on a low potassium diet, as her kidneys are starting to struggle with managing the anti-rejection drugs.  She is also at risk of this new heart failing and needing another transplant. Her family’s biggest hope and dream for her is to live a long and happy life.

Story written by Angela Reimche

Images Captured by Jennifer Boggett Photography

Beckem's Story

Images Captured By Jamie Allport Photography

When Beckem was born, things immediately took a turn for the worse and he needed to be put on life support. His parents didn’t even get to know if he was a boy or girl for several minutes after his birth.

Beckem couldn’t sit up until he was 18 months old, didn’t crawl until he was two and half, and couldn’t walk until he was three and a half. His condition was a medical mystery for nearly four and a half years.

Finally, Beckem was diagnosed with moderate autism and Coffin-Siris syndrome, a rare genetic disorder that affects several body systems. Most individuals affected by this syndrome have mild to severe intellectual disabilities, delayed speech development and delayed motor skills. Beckem also has moderate hearing loss and infantile scoliosis. As a result, he’s had many surgeries for his spine. Beckem’s family was devastated; the emotional stress was immense. However, they’ve learned not just to cope but have been inspired to action.

Beckem’s Mom says, “The inspiration he’s given us is not to be only good parents, but better people. He inspired me to start a social network for parents who have children with special needs called the FiT Network. It’s not about waiting for the storm to pass, but learning to dance in the rain. You can’t adjust the wind but you can adjust your sails.”

As a result of this social network, many families are getting social support, educational support and seminars, workshops and retreats that otherwise would not exist today. Beckem’s mom doesn’t know what the future holds for her son but she hopes he can find peace and joy in his life.

Story Written by Kelsey Walker

Margaret's Story

Images Captured by Photo Tales by Carmalee

Tiny Light Margaret is a beautiful, happy three-year-old. At six months old, she was diagnosed with a catastrophic form of epilepsy called Infantile Spasms, otherwise known as West Syndrome. She went from a normally developing baby to a baby who had hundreds of brain damaging seizures a day. After medications, the seizures stopped for a short time, but in June 2012, they came back. The more seizures Margaret had, the more she regressed.

In January 2011, doctors further diagnosed Margaret with Epileptic Encephalopathy with intractable seizures as well as severe functional communication disorder with autistic traits. Because Tiny Light Margaret has had several seizures a day, she was at risk for developing convulsive clonic tonic seizures. As of October 2013, Christine, Margaret’s mother, reports that Margaret has in fact developed convulsive clonic tonic seizures that have resulted in hospilization. These seizures have caused more regression for this Tiny Light.

Margaret is responding well to her new medication, and her family hopes for a seizure-free life. The future may hold brain surgery for Tiny Light Margaret, where doctors would remove the part of her brain that starts the seizures. She may also lose her mobility. She may also respond well to her medication, stopping all seizures and, therefore, finally allowing her brain to continue to develop.

Although the family has suffered financially due to all the time lost from work to attend appointments and hospilizations, mom Christine is thankful for the things that Margaret has taught them to appreciate: like eating with a spoon, walking and laughing. Christine says, Margaret’s diagnoses and battles have been life changing for the family, but ‘we live each day as it comes.’ They hope that her future holds a life free from seizures and that Margaret maintains her happiness with the world around her.

Tiny Light Margaret has the ability to laugh, sing, dance, jump and smile through everything. Her family continues to take each day at a time and celebrate her!

Story Written by Valerie Bush

Kyle's Story

Images Captured by Lori Waltenbury Photography

Meet Tiny Light Kyle. He loves playing with his friends and cousins, colouring, drawing pictures, playing with mighty machines, cars, trucks, and trains and riding on his John Deere toy tractor outside. He also likes listening to music videos on the family’s iPad.

During a follow-up appointment with Kyle’s allergy specialist, Kyle’s mother, Shanna, shared some concerns with the doctor about a few bleeding noses and bruises that were darker than normal. Routine blood work turned into a trip to the emergency room for more tests. The next morning Kyle was flown by air ambulance to the Children's Hospital of Eastern Ontario (CHEO) in Ottawa.

Kyle’s parents, Shanna and Joey Lecuyer, were devastated when Kyle was diagnosed with acute lymphoblastic leukemia (ALL). Terrified of what the future held for their little boy, they found some hope in the assurances from the doctors about advances in cancer treatments.

Unfortunately, Kyle has not responded to chemotherapy as hoped. He’s still minimal residual disease (MRD) positive, so he must undergo a stem cell transplant. None of Kyle’s family are a match so they had to wait to see if Kyle could find an unrelated match on the bone marrow registry. Kyle will be undergoing a stem cell transplant at Sick Kids Hospital in Toronto.

Kyle is tough, compassionate, and considerate. He’s very attached to his blue blanket, which he calls "baby." When he’s sad or doesn't feel well, his blanket always makes him feel better. Kyle tries to charm all the nurses with his big blue eyes and smile—and it usually works! If someone is sad, Kyle tries to think of things that might make them happy.

Shanna and Joey found that no one can do it on their own and are amazed by the support from family, friends, and the community. They say, “Stories from other family members whose children are doing well inspire us.”

The family’s hope is that Kyle will get better and live a long and healthy life. They would love to see him grow up to big and strong like his daddy.

Story Written by Monica Rolinski

Julia's Story

Images Captured by Kristy Macleod Photography

Tiny Light Julia is a special, loving girl who was just 23 months old when she was diagnosed with autism. After developing normally until 15 months, Mom immediately knew something was wrong when Julia started to regress and lose skills. With a lot of help from Early Intervention, she has made great strides, and now amazes her Mom daily with the things she can do. Although she is unable to speak and initially had frustrations trying to communicate, now, at six years old, Julia has learned to use special pictures (pictures exchange system) and her big, beautiful smile to do so!

Julia lives with her Mom and big sister Petra. She enjoys going to the park, dancing and listening to music. She even loves going to school, where she is blossoming. Her mother describes her as “a precious angel who has taught me a lot about life.” Julia has helped her family to appreciate what is important in life, and take nothing for granted.

Julia and her family participate in Autism Awareness Day to increase understanding of this disease. Mom hopes that increased awareness will help others to be more sensitive to those with autism. Big sister Petra participates in the festivities as well, speaking about how important her sister is to her, and how her “actions speak louder than words.” With her family’s unwavering support, tiny light Julia undoubtedly has a very bright future!

Story Written by Ardis Fisch

Kaelene's Story

Images Captured by Kristin Gibson Photography

Meet Tiny Light Kaelene. At four months old, she was diagnosed with a blockage
between her kidney and her bladder. When Kaelene was less than a year old,
doctors removed the blockage and fused the two organs back together.

Kaelene means everything to her mother. Despite her difficulties, Kaelene remains
strong. While she now faces a lung deficiency and seizures, she continues to grow
and smile. Kaelene’s mom has feared the worst for her daughter, but looking at
Kaelene’s face reminds her that her child is receiving all the help she needs. She
knows that together they will persevere.

Story written by Angela Funk

Liam's Story

Images Captured by Rebecca Hall Photography

Tiny Light Liam enjoys music, singing and dance. He also enjoys sports like basketball,
swimming and skiing. Most importantly though, he loves hanging out with his little sister
Evalyn.

The day after Liam was born, his doctor sent him for genetic testing due to some indications of Down Syndrome. Seven days later, Liam was diagnosed with Trisomy 21 and a small hole in his heart. News of the diagnosis was devastating for Liam’s family. The first few years were
particularly difficult as Liam suffered from several illnesses that required hospitalization due to having a lower immune system. Mom, Lisa, notes “...it is never nice seeing your baby hooked up to tubes and machines.”

Although Liam’s diagnosis of Down Syndrome will never be withdrawn, Liam is currently
doing well, and the hole in his heart has closed. Liam’s parents aim to help him with all of his
goals, whatever they may be, so that Liam can focus on being “...the best person he can be.”
Every milestone Liam hits is celebrated, and the optimism and love surrounding him fuels his
determination to reach the next one.

As a message to other Tiny Light families, Liam’s parents’ state, “each one of our Tiny Lights is unique and they will reach their milestones at different times, but with our love and perseverance they are capable of anything!”

Story by Stephanie Bond

Emma's Story

Images Captured by Portraits by Johanna

Tiny light Emma arrived nearly two years ago, and ever since this very determined bundle of joy has managed every challenge with courage. She adores playing with her big brother Wesley, playing peekaboo, putting things in and out of her purse, talking on Skype and playing doctor.

It was at the 20-week ultrasound that parents Anne and Greg Schnare learned about Emma's chronic heart disease. She was diagnosed with hypoplastic left heart syndrome, a double outlet right ventricle, an unbalanced AVSD, a functional single ventricle, small muscular VSD, pulmonary stenosis, subpulmonic stenosis and a systolic murmur audible at the left sternal border. Her parents say they knew they had to give their baby girl a chance to fight and live.

Emma has already endured her first open heart surgery and she’ll need at least one more. These would be traumatic events for anyone, yet this brave little girl continues to amaze everyone with her perseverance. Emma's family isn't sure what the future holds. While they fear losing her one day, they're hoping she’ll live a happy and long life. For now they try to enjoy every day they have with their beautiful little girl.

Story Written by Catherine Urquhart