Alejandra's Story

Images Captured by Stephanie Brown Design

Tiny Light Alejandra is just three years old. When her mom, Antonella, was seven months pregnant, she was told that her unborn little girl would be born with spina bifida and hydrocephalus. She prayed that all the doctors would be wrong. But, as well as the diagnosis of spina bifida and hydrocephalus, Alejandra also had dislocated hips and a clubbed left foot.

Mom is challenged every day by her Tiny Light’s health issues but she loves to watch Alejandra reach her milestones. Alejandra loves having someone read to her and loves watching Toopy and Binoo. Like any three-year-old, she loves to play and dance. Even when Alejandra is feeling a little down, she manages to share a smile with those around her.

As a single parent, mom Antonella says it’s hard doing it alone, but her daughter gives her strength and reminds her of the woman she used to be. She says, “They can grow up to be everything you ever dreamed possible for them.” Taking it day by day and sharing cuddles with her little girl will help Antonella stay focused on their goals and get her through the challenges they face. And she’ll always be surrounded by family and friends who love her.

Written by Valerie Bush

Levi's Story

At only an hour old, nurses noticed that Tiny Light Levi wasn’t breathing properly.
Doctors diagnosed him with Hypoplastic Left Heart Syndrome. Levi’s heart failed to
grow a left ventricle, and, therefore, his heart wasn’t pumping enough blood through
it.

Images Captured By D4 Photography

This Tiny Light had his first surgery at only three weeks old. The surgeries kept
coming. At four months old, Levi’s liver failed and he underwent another surgery.
At 18 months old, he had open-heart surgery, and at 3 years old, yet another to save
his life. Due to complications from his previous surgeries, scar tissue had become
tangled up in his small intestine, which, had in turn, caused it to die.

Levi’s mother, Christine, says, ‘You just want to suffer instead of him.’ Watching her
little boy suffer is heartbreaking, but the community support they have received
has been overwhelming. Tiny Light Levi is a brave eight-year-old boy. He loves
math and soccer, and loves camping with his family. He has the best smile, and has
learned to be very empathetic towards others. He once gave a nurse a kiss because
she felt bad she had to give him needles!

Christine is reminded everyday how precious life is through her son, Levi. Levi will
always be weak, and he will likely have other surgeries ahead of him. His heart
works very hard every day to compensate for the loss of the left ventricle. Tiny
Light Levi’s dream is to be a baker and have his own bakery some day. His parents
know he will be happy with whatever he does.

Written by Valerie Bush

Lukas' Story

Images Captured by Stephanie Brown Design

Tiny Light Lukas goes by the name “Lucky.” He’s been obsessed with letters since
he was a baby and loves to play video games on his Xbox, especially sports
games like NASCAR, baseball, soccer and golf. He also loves playing road
hockey and soccer outside with his brother Cameron.

Lucky’s family is inspired and amazed by how much he learns; he surprises them
with new things all the time. They especially love seeing him interact with animals
because they “always get the biggest reaction from him.”

Born eight weeks early with markers indicating he could have a genetic disorder,
Lucky was diagnosed with Kabuki syndrome at the age of two. Lucky’s parents,
Donna and Clint Cuyler, admit the news was “very scary and devastating” but
they came to accept his diagnosis, deciding that they would let nothing stand in
his way as he reached his full potential.

Kabuki syndrome is very rare and affects every child differently, bringing with it
the unknown. Lucky is affected by global developmental delay, low muscle tone,
and a syrinx (or cyst) in his spinal cord, which affects the nerves feeding the lower
half of his body, including his bowels and bladder. He’s also sensitive to music,
textures and temperature. Having a child with special needs has challenged
Donna and Clint to adjust to a new reality and learn to deal with what comes day
by day, challenge by challenge. They can see how perfect Lucky is because he
opens the world to joys and opportunities they would never have imagined. Their
greatest hope for Lucky is that he’s never bound by his disability.

The Cuyler’s journey with Lucky has shown them how much support there is in
the community for special children. Their best advice to parents? “Never put
limits on what you think your child can do … let them soar.”

Story written by Adrianna Tailleur

Nathan's Story

Images Captured by CM Photo Art

Tiny Light Nathan brings sunshine and smiles to everyone who comes close.  He has a fighting spirit, and has so far defied all the predictions of his doctors.  Nathan’s adorable chubby cheeks, wide, cheering smile, and his happy coos soften the heart of everyone who meets him.

Nathan has interhemispheric arachnoidal cyst, agenesis of the corpus collasum, missing splenium, nystagmus, sun setting eyes, and low oxygen saturation.  He faces a battle every day to stay alert, feed well, and to stimulate his brain to the fullest so that he can grow and reach milestones.  His challenge is to keep feeding well, get enough oxygen, and to live each day to the fullest because he is quite the sleepy little boy.  

By four weeks old, Nathan had already undergone two difficult surgeries.  He came through like a champion, and continues to do better than expected.  He is being followed by a number of clinics, and has captivated many with his adorable and radiant personality.  His parents, Mark and Ronda, are amazed at the strength and spirit that Nathan has shown the world.  The family takes huge comfort from the support of their friends, family, and church congregation, who have been very supportive of their journey with Nathan.

He and his older brother are both a joy to Mark and Ronda, who cherish every day with their boys.  Nathan may have called NICU home for a while and has spent time in hospitals, but he is in his real home now.  His family is so thrilled to have their tiny light with them every day.  There is no sure prognosis for Nathan.  His mom says, "There are numerous concerns such as epilepsy, mild to severe mental challenges, developmental challenges, vision issues and feeding problems," but his parents are hopeful that Nathan will live a full and very happy life.

Story written by Andrea Lee

Nevaeh's Story

Images Captured by D4 Photography

Tiny Light Nevaeh is always ready with a smile, a hug and a big beautiful
laugh. This spunky four year old girl has shown everyone that life is full of
love…all we need to do is get out there and live.

Nevaeh was diagnosed with Down syndrome at birth. Doctors were also
concerned about heart defects – atrial and ventricular septal defects – as
well as fluid in the lungs.  Though parents Melissa and Corey were
hopeful the heart would heal on their own, Nevaeh had to undergo
surgery at six months. Then at one year, this tough little girl had another
operation to correct craniosynostosis – a birth defect that causes the
sutures on a baby’s head to close too early.

Though the road hasn’t always been easy, especially dealing with
misconceptions about children with Down syndrome, Nevaeh is happy
and healthy. She loves to read books and mother her baby dolls. She is
especially good at drawing rainbows and enjoys breaking out the dance
moves with her younger sister. Communication is a challenge, but
Nevaeh knows over 200 signs.

This Tiny Light has a wonderful future in front of her and no matter
what path she chooses, her family will stand proudly at her side.
“Nevaeh is amazing. She has shown me that so many of us complain
and take things for granted. Enjoy the little things because we all know
it is the little things that make life worth living.”

Story Written by Elaine Yong

Kaylee's Story

Images Captured by D4 Photography

Kaylee was born December 4, 2010 and was instantly loved by so many. She arrived weighing 7 lbs 9 ozs, with beautiful blue eyes and appearing happy and healthy.

At five months, Kaylee started having seizures and no longer drank her milk. Following a series of medical tests, her parents received devastating news. Kaylee had Leigh's disease, a rare neurometabolic disorder that affects the central nervous system, causing loss of motor skills and eventually death. Kaylee's doctors didn't think she would survive much longer than a year. Happily, she proved them wrong. Despite many days in hospital, this tiny light had much to live for, such as visits with her Great
Nana and Great Grampie and Grandma and Grandpa Detka. Thankfully, her loved ones surrounded her with much love and happiness. With her mom she'd bake cakes, sing and dance in her wheelchair or read and watch videos. And at the end of the day, it was daddy time!

Kaylee loved her first trip to the swimming pool. Sadly, it was also her last. Kaylee passed away at just two and a half years old. But she left her loved ones with many beautiful memories. Just days before she died, she laughed really hard and for the first time said "Mommy," treasured gifts for her family, who will miss her always.

Story Written by Catherine Urquhart

Kael's Story

Images Captured by Cormack Photography 

Meet Tiny Light Kael.

This little Tiny Light loves riding on his 24V John Deere tractor with trailer and riding in his Dad’s truck towing the cargo trailer or “fifth wheel.” Kael loves spending time with his grandparents and really likes being in the water—from playing in the bathtub to swimming in the lake. Also, his family says he gives the best snuggles.

Kael was born on time with no complications. Everything seemed normal until he was about six months old and his weight and head circumference started to fall off the charts. Testing from the age of six months to six years turned up nothing. Kael’s family had no answers as to what was causing his condition. It was after his third MRI that his parents, Kristine and Cam, received a phone call from the neurologist informing them that Kael’s white brain matter had gotten brighter, which indicated the possibility of a brain disease.

After further testing, Kael was diagnosed with type 1 Cockayne syndrome, a genetic disorder characterized by poor growth, premature aging, sensitivity to sunlight, moderate to severe developmental and neurological delays and a shortened lifespan. We’re not sure what the future holds for this little Tiny Light. All his family hopes is that Kael can enjoy the people and places he will encounter in life and to “just be a happy boy.”

Written by Kelsey Walker
Edited by Karin Keefe

Conrad's Story

    Meet Tiny Light Conrad, a very friendly boy who loves making new friends. He likes playing with cars and trucks, and watching Sesame Street and Cars videos on his ipod. He really enjoys riding his quad outside and especially loves fishing and helping his grandpas drive their boats—all the things that a typical three-year-old boy would enjoy. But there is something that sets Conrad apart from most three-year-olds and it has caused his family’s whole world to tremble.
    

     On May 27, 2011 Conrad was diagnosed with acute lymphoblastic leukemia. On top of his threeand-a-half-year treatment cycle, Conrad also deals with fevers every three months no matter what is happening. His parents say the hardest part is watching their son go through all this and not really understanding why or what he’s going through. When he does get a fever, Conrad doesn’t understand why he is in the hospital for days, sometimes even weeks. That, too, is hard on his parents.
    

    Despite the daily struggle this little warrior faces, he tackles it head on with amazing courage for a child his age. He takes it all like a true champion and pushes through every challenge thrown at him, not letting anything slow him down. The possibility of relapse scares his parents the most, but they remain positive, focusing on the “now” and not the “what if’s.” Advice they have for other parents in similar situations is to “stay strong, stay positive, ask lots of questions and be your child’s advocate.”

Images Captured by Simply B Photos
Story written by Adrianna Tailleur

Logan's Story

Images Captured by Samantha Jiwa Photography

This Tiny Light has tremendous toughness underneath his cute exterior.  By the time Logan was three and a half months old, he had already been through more health challenges than some people face in a lifetime.

The ordeal began just two months after his birth, when Logan spiked a fever.  His mother Katelyn took him to the local emergency department and as the hours went by, little Logan developed a rash and grew very pale.  He was diagnosed with meningitis and transferred to the nearest children’s hospital.  After an MRI was performed, a team of neurosurgeons went to meet with the family.

The MRI had revealed that a dimple at the base of Logan’s lower back actually had a little hole in it leading directly to his spinal cord.  E. coli bacteria from his feces had been getting into the hole, causing the meningitis.  Surgery was the answer to the problem, but Logan’s unusual story wasn’t over yet.  As the surgeons followed the hole through to Logan’s spinal cord, they discovered and removed a tumour, and an abscess which had been draining into his spinal fluid.  Also, there were other abnormalities which made the operation especially challenging.  

Logan spent a total of five weeks in the hospital, but as Katelyn says, “The most amazing thing was watching him go through such a hard thing and be so cooperative with the staff with blood work and bandage changes and anything else they needed to do.”  Months later, this Tiny Light is doing well with no apparent regrowth of the tumour.  He is being monitored for any long-term effects from the meningitis and the spinal cord abnormalities.  

Written by Jayne Akizuki

Owen's Story

Images Captured By Jamie Allport Photography

Tiny Light Owen is a happy little guy who loves making his mommy and daddy smile. He enjoys holding toys, saying the few words he has learned, and holding up his good leg so his parents can “eat it”. He has surprised everyone with his strength and determination and continually proves doctors wrong by learning to do what they say he will never be capable of.

Owen was born in March of 2011 in severe respiratory distress. He spent the majority of his first year in the hospital and was finally diagnosed in March 2012 with CHARGE Syndrome, a rare genetic disorder. CHARGE Syndrome consists of a wide variety of birth defects that vary depending on the individual. “C” stands for coloboma of the eye (a hole in one of the eye structures), “H” for heart defects, “A” for atresia of the nasal choanae (a blockage in the back of the nasal passage, caused by abnormal bony or soft tissue), “R” for retardation of growth and/or development, “G” for genital and/or urinary abnormalities, and “E” for ear abnormalities and deafness. Owen has overlapping skull plates, lower set ears, choanal atresia, narrowed eardrums, an atrial septal heart defect, laryngomalacia (weak cartilage), a small trachea, larynx, and windpipe, as well as hydronephrosis of his kidney (water in the kidney), umbilical and inguinal hernias, and hip dysplasia.

With the exception of the odd surgery or feeding tube complication, Owen is doing well. Most children with CHARGE Syndrome don’t survive their first year, but Owen is two years old and continues to grow stronger. He has recently learned to sit on his own for up to 40 seconds! While the future is uncertain and more challenges are likely to arise, Owen’s parents remain hopeful. Problems can arise at any time and even the common cold can cause major complications. While there have been many moments that have been difficult and scary, they are thankful for every day they have with their son. As his mom says, “He is perfect in every way and I know I wouldn’t trade a second of this journey for any other.”

Story by Emily Harrison