Nolan's Story

Images captured by Lynne Williams Photography

www.lynnewilliamsphotography.ca

It’s not about limitations, it’s all about possibilities for Tiny Light Nolan and his parents. Nolan just turned 4 years old and he is thriving, proving all the doctors wrong with his determination and resilience.

Nolan was born premature at a wee 3 pounds 13 ounces. He spent more than six months in the NICU battling a number of complications including stop-breathing episodes, which required resuscitation. He has since been diagnosed with several conditions including Cerebral Palsy, low muscle tone, epilepsy and global developmental delay. This has meant four surgeries and countless medical appointments.

While it has been heartbreaking for Anna and John to see their son in pain, they focus on the small victories every day. “Nolan is our miracle baby. We do not define him by his diagnosis and truly believe he is meant to be as he is.” Although he can’t talk, this resourceful little boy has been able to find ways to communicate. He rolls his eyes away when he wants you to stop, a shoulder shrug means he’s full, and a cluck of the tongue is for a sip of water.

This Tiny Light is all smiles when enjoying a dance with mom or dad. He also loves the swings and playing in the water. No one knows what the future holds for Nolan, but this family is firmly focused in living in the present. “Take each day, one at a time, and be thankful for the little moments and little successes because when you look back, they may be the big ones.”

Benjamin's Story

Images Captured by Devon Hall Photographics

Despite everything Tiny Light Benjamin has gone through, he is always happy and full of smiles. This little boy has been a fighter since he and his twin brother Kyle were born at 25 weeks gestation. Benjamin weighed just 1lb 7oz. 


Doctors could not predict the kind of life Benjamin would have after suffering a stroke but parents Gary and Greta wouldn’t give up on their baby boy.  He has had many health challenges including surgery to repair a duct that didn’t close at birth. He also had hydrocephalus which required an endoscopic procedure on his brain.  Benjamin is fed through a G-J tube and he needs help with his breathing due to lung damage. He is on medication for seizures as well. 


Earlier this year, Benjamin became extremely sick from a respiratory virus. He ended up at BC Children’s Hospital for three months and had to be on ECMO (heart-lung machine) for two weeks. Doctors weren’t sure if this brave 4 year old would survive, but he has thrived. “He is back to baseline and even a little further. He is amazing the doctors with his progress since being so sick.” 


Benjamin loves playing with his twin brother and younger brother Devon. He enjoys going for walks with the help of a crocodile walker. He also enjoys music and reading books. This Tiny Light and his positive attitude have been such an inspiration to his family.  The future is uncertain but his parents have one big wish, “Most of all we hope he just enjoys being who he is.” 


Written by Elaine Yong

Rachel's Story

Images Captured by Melissa DePape Photography

Meet Tiny Light Rachel. With three lovable brothers to keep her busy, this little one never ceases to amaze those around her with her happy spirit.


Before Rachel was even born, doctors diagnosed her with having Trisomy 18, otherwise known as Edwards Syndrome. Edwards Syndrome is a rare chromosome disorder in which an individual has a third copy of material from chromosome 18. Due to the nature of the disorder, it has often been characterized by the medical community as a disorder that is “incompatible with life.”


Although the view of the disorder from the medical community was very difficult to deal with, Rachel’s parents persevered and underwent a very “...scary pregnancy, full of sorrow and confusion, hoping against hope that she might be one of the rare ones.” 


Despite the fact that Rachel has medical challenges, she is a very happy child and provides a “constant ray of sunshine” in her family’s home. Like every other child her age, she “smiles, laughs, waves and plays with her toys.” Her joy continues to inspire her family on a daily basis, and they consider her “...a miracle from heaven...[and]...wouldn’t trade her for the world.”


Story by Stephanie Bond

Benjamin's Story

Images Captured by Melissa DePape Phoography

www.melissadepape.com

Benjamin is a three year old boy who continues to defy all odds against him and light up the lives of everyone who meets him. He challenges family, friends and others who come into contact with him to look at disability through his eyes and see just how "normal" someone with a disability truly can be.
 

At sixteen months of age, Ben was in the Stollery Children's Hospital getting an NG tube put in to address his nutritional concerns; his neurologist heard we were there and came to visit. She broke the news that changed our lives forever. Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3 (PCH3). What this meant for Ben was a low life expectancy of eighteen months and not much hope for development. We were devastated and immediately took to the internet to "Google it" against the advice of our doctors. Ben is one of only five individuals (four living) to be officially diagnosed with PCH3. He is our little anomaly.
 

Now, at three and a half, Ben is thriving and generally healthy. He experiences global delay in most areas but is determined to overcome his own barriers. He is able to communicate using sounds, cries and the occasional word - most often calling for Dad. While he has extreme challenges, he is a willing participant in his day program and loves the time he spends with his Developmental Specialist provided by the GRIT program. The biggest obstacle and fear for us as his parents has been ensuring and feeling confident in the decisions we make for his future. Our goal is to determine what is best for him based on his reaction and comfort level in a given situation (and desperately hope we are able to read his signals accurately). We choose not to focus on his life expectancy and what he cannot do, instead living each day just as any other family would. We choose not to plan our lives around Benjamin but instead choose to plan ahead for him so he can be included the same way as his siblings.
 

Whether it is rough housing, watching Waybuloo over and over or spending time with his grandparents, each day with Ben is a great one. Both his sisters adore him and he brightens the lives of our family and friends with his infectious giggle and twinkling eyes. We feel very fortunate to have Benjamin as our son.

Story Written by Benjamin's mother Kristi Hall-Busque

Lindsay's Story

Images Captured by Sprout Photography 

www.sproutphoto.ca

Tiny Light Lindsay loves life. She meets all her challenges with resilience and strength. Her mom Naomi says, “She lives in the present and has no fear.” The things in life that bring Lindsay the most joy are amusement parks, Chucky Cheese and balloons.
Throughout the pregnancy, there were indications something was not right, but doctors dismissed them as nothing important. The prognosis following Lindsay’s birth left her family reeling. For the first years of her life, they were in survival mode, doing everything in their power to ensure their little daughter lived.
Lindsay has an undiagnosed genetic disorder that affects multiple areas of her body. She is considered palliative, which means doctors treat the symptoms and reduce her pain without eliminating the cause. Lindsay is hearing and visually impaired, and suffers from seizure and bowel disorders. On top of that, this young survivor battled kidney cancer at the age of 2, losing a kidney in the process. Lindsay has spent her life in and out of hospital.
For other parents who are facing the same challenges, the family offers these words of advice: “Don’t feel guilty for getting help to take care of your child, and make sure you remember to take care of yourself.” While they do not know what the future has in store for them, they are praying for one that is “pain and illness free.”  All they know for sure is that, with Lindsay, it will be filled with love and joy.
 

Story Written by Tara Anderson

Caleb's Story

Images Captured by Petra King Photography

www.petrakingphotography.com

This is Tiny Light Caleb. Although he and little sister Hannah are eleven months apart, they are best friends and are often mistaken for twins. Full of energy, Caleb keeps his parents Sharon and Derrick on their toes.

During mom's eighteen week routine ultrasound, the technician discovered some “red flags and indicators” that suggested the baby may have Down syndrome as well as other medical issues.  A follow-up specialized ultrasound was booked and the realization of the news starting sinking in.  The entire family spent much time praying for a miracle. Their prayers were not in vain; the doctor reported the initial worries about small holes in their baby’s head and heart were amiss and he stated he had never seen a healthier heart.

In January of 2010, the family gave birth to their second daughter, Grace.  Sadly, she was born very sick and was taken off life support only thirty-one short days later.  During that time, Grace taught the family more than a lifetime of books or schooling ever could.

Now at the age of four, Caleb is one of the greatest joys in his family and friends' lives.  The also celebrated a new addition to their family when Zachary was born in October.  While it took a long time for the family to accept Caleb’s diagnosis - out of worry for the struggles he may face - their Tiny Light has taught them so much, "God is revealing to us everyday the joy and love Caleb has to offer. He has truly demonstrated what love, mercy and grace are really all about."

Story Written by Kristi Hall-Busque

Gregor's Story

Images Captured by Rhonda DeMone Photography

www.rdphoto.ca

Meet Tiny Light Gregor. Now that he is able to sit independently, there is no stopping him as he scoots around on the floor. He sure is curious and is always testing to see if you’re watching because he loves to get into everything! A few of this toddler's favourite things to play with are the cupboards, toilets and the dog’s dish. If Gregor was in charge of planning his day it would include: swimming, playing ball, reading books, music, dancing, and of course playing with his big sister Brynn. These two share a very special bond.

Gregor has Down syndrome. When he was born, he had to be resuscitated. His heart had a small hole and he had pulmonary hypertension. His patent ductus arteriosus, a blood vessel that is supposed to close over soon after birth, didn't close. Thankfully, all those issues have resolved over time but Gregor's medical problems did not end there. At 9 months, he became one of the youngest patients ever to be diagnosed with juvenile diabetes. He spent the next few months in and out of the hospital, battling various infections. Just before his first birthday, Gregor went into kidney failure from interstitial tubular nephritis. On top of all that, this brave boy was diagnosed with high-risk acute lymphoblastic leukemia in October 2010. After a year of chemotherapy treatments, Gregor is in remission. Now the three year old is not only surviving, but thriving.

The medical journey has been challenging for the family. Children with Down syndrome are at greater risk of heart complications, especially frightening for parents Duncan and Melanie. Their first son Bergen passed away from a very rare congenital heart disease when he was just eight months old. With Gregor, diabetes means a complicated daily routine of testing glucose and administering insulin. Plus, there are still two and a half years of chemotherapy ahead.

But Gregor is not only surviving, he is thriving. This amazing little man redefines what it means to be a hero. He was the honored hero for the Leukemia Lymphoma Society’s Team in Training campaign for 2011. Gregor has a love for life. He is strong and cheerful, his lips always curled into a smile. Sit with this Tiny Light and be prepared to cuddle! “When he rests his head on your shoulders he reaches up and plays with your hair. He is so full of love for everyone.” 

written by Tara Anderson

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!”

William's Story

Images Captured By Christy Wells Photography

www.christywellsphotography.com

Meet Tiny Light Will – his mom believes that Will can see angels.

William was born a typical, healthy little boy but suffered from a Meningitis infection at only three days old which caused a great deal of damage to his brain.  His official diagnosis is Cerebral Palsy stemming from a brain injury; he also experiences bilateral hearing loss.  When he was just five days old, the doctors informed them of just how bad the damage was and warned them that Will would likely not make it much longer.  They were devastated.

But being the fighter he is, Will has overcome all odds set against him; he is a gift to his family and friends.  There are always fears that he will not be treated well or with the respect he deserves, but his family works hard at ensuring that only the best people are around him.  Will is out in the community every day, and they realize that they cannot control  what others think or do; they can only hope to help teach those who are willing to listen.

Will is technically on “palliative care,” but his mom jokes, “aren’t we all?”  He lights up the world around him by simply existing.  This four-year-old loves music and dancing, playing in water and watching his peers play around him.  He currently participates in a day program called G.R.I.T (Getting Ready for Inclusion Today) that assists him accomplishing specific personal goals.

His family wishes for him to be the best Will he can be and that his life is filled with support, happiness and joy.  They are excited to share pictures of Will so others can witness how brightly he shines.

Addison's Story

Images Captured By brand One Studios

 www.brand1studios.com

 Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.

Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."

Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!

An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."

"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!

Story by Angela Stephen-Dewhurst