Tyler's Story

Images Captured By Caroline Ross Photography

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

Andrew & Matthew's Story

Images Captured by Anna Jones Photography

These Tiny Light twins may face challenges, but they never complain and wish their lives were any different.  Andrew has atypical autism and moderate/severe spastic cerebral palsy, requiring a wheelchair for most of his day-to-day activities.  Matthew has ADD and mild cerebral palsy, which affects his motor skills.

Their parents knew the twins would have some form of disability before they were born.  Andrew was officially diagnosed at 6 months, Matthew at 3 years of age.  “We were in one way thrilled the twins had survived to delivery and made it home from the NICU, but we knew that life would be challenging as the parents of twins – and twins with special needs.”

The 12-year old brothers are great working together, but they have very different aspirations.  Andrew wants to be a DJ.  Matthew dreams of being a pilot.

This family has faced many ups and downs, yet there is so much to look forward to with these Tiny Lights.  “The slower pace does allow you to truly enjoy the moment that might otherwise pass you by.”

Written by Elaine Yong

Nolan's Story

Images captured by Lynne Williams Photography

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.”

William's Story

Images Captured By Christy Wells Photography

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.

Christian's Story

Images Captured by Misty Dawson Photography

Tiny Light Christian always has a smile on his face, despite the struggles he faces every day. He is a “low-key kind of guy” who enjoys spending his time in quiet and peaceful environments. He is very affectionate and loves when his mother runs her fingers through his hair as he falls asleep. He also loves relaxing in the pool and being in his Snoezelen room (a controlled multisensory environment). 

After a healthy pregnancy, Christian’s mother had complications during her delivery. Due to a lack of oxygen to his brain, Christian was born with cerebral palsy with spastic quadriplegia and global development delay. He also lives with a severe seizure disorder, scoliosis, and cortical blindness. Christian requires a feeding tube and reacts poorly to too much stimulation, noise, and even the weather. He requires constant care and supervision and needs someone to provide suctioning so he does not choke.  Because of this, it is challenging for him to leave the house with his family.

Last year marked a milestone for Christian, as he exceeded the life expectancy his doctors predicted. His health continues to deteriorate but his family cherishes every moment they have with him. Christian has had an incredible impact on his family and those around him. “He has brought a whole new meaning to life and has led us down a path we wouldn't have known if not for him.”

Story by Emily Harrison

Anthony's Story

Images Captured by Gabi Moller photography

There is only positive energy allowed in Tiny Light Anthony’s life. His family has even adopted an uplifting motto - “good times are coming one day at a time”. 

After a normal pregnancy and delivery, at just 3 days old, Anthony had a 7 minute long seizure. His parents were devastated to find out their first child had suffered a stroke in utero. Even now, doctors still aren’t sure of a diagnosis or what the long-term future holds. 

Anthony has developmental delays affecting several parts of his body. He has a form of Cerebral Palsy, which means he can’t walk, sit or crawl without support. He needs to be tube fed through his stomach. His vision is impaired and he is non-verbal. Anthony is on a cocktail of medication to control epileptic seizures. 

Through it all, this lovable 5-year old can’t get enough hugs and kisses. He makes friends everywhere he goes. He has taught his family so much about compassion and unconditional love. “My little man NEVER gives up on life…so how dare I give up on him?” 

His parents are committed to giving their beautiful boy the best life possible. The family home has been remodeled to make it wheelchair friendly, including an elevator at the side of the house. “Anthony is here for a reason. We might not know why this tragedy happened or why he is here, but his story is not finished yet and is still continuing.”

Story By Elaine Yong

Faith & Joy's Story

Images by Bittersweet Photography

These Tiny Light twins could not have been more appropriately named. Meet Faith and Joy. These sisters were born premature at 23 weeks and 5 days. Faith weighed 1.6 lb and Joy 1.7 lb. They each underwent heart surgery at 2.5 weeks old, weighing less than 2 lb each. Now two years old, Faith and Joy love being read to and watching In the Night Garden

Both girls now have cerebral palsy. Joy is parapelgia and Faith is hemipelgia. This means that Joy has it throughout her body and Faith just in part of her body. Joy's CP diagnosis came about four months and Faith six months after their six-month NICU stay. While no one was surprised, it was devastating. Faith and Joy’s parents were told that their daughters had a 4% chance to live if they made it past the first 24 hours. “We are so grateful and thankful to have them both here with us. We will take them anyway we can get them!”  

The hardest part of the journey is the fact that they don’t know what is coming next. The girls have limited range to be able to do very much. Joy will most likely be in a wheelchair due to her inability to be mobile. Faith will likely need a walker, or she may also require a wheelchair like her sister. The girls’ mom only wishes that her girls will both accept who they are and be happy with themselves. She doesn’t have fears, as the girls have already overcome so many obstacles that she is certain they will be able to overcome anything handed to them.  

“As long as you have Faith, in the end you will have Joy!” 

Story by Angela Stephen-Dewhurst 

Zachary's Story

Images by Portraits by Josée

As a triplet, Zachary was surrounded by love even before he was born.  When he and his brothers arrived two and a half years ago, their older sister was thrilled.  Now, Zach has a younger sister who helps look after him too. This Tiny Light has flourished with all that love and support.

Parents Barbara and Simon say their children are too young to understand what Zach’s diagnosis of cerebral palsy means, but they all know he is different. “Zach’s  womb-mates are gentle with him, without being  told.  They laugh and joke with him without being affected by his physical differences.” His older sister carries him around, and his younger sister is often down on the floor playing with him.

Doctors told the family Zach had a brain injury less than one week after he and his triplet brothers were born. But they did not get the official heartbreaking diagnosis of CP (affecting all four limbs of his body) until 11 months later.

Since then, life has changed completely for this resilient family. Taking care of Zach is more than a full-time job, and the expenses for special equipment and therapies continue to add up.

But there is also so much joy.  “When you have a child who struggles to do things everyone else takes for granted, you have such an appreciation for every little thing your child learns.” Zach loves to bike, swim, and play ball.  He often sings to himself while playing. He enjoys reading books about trains or animals. Right now, he is learning his letters and can spell and recognize his name.

There is good news for this happy little boy’s future. Before, doctors didn’t think Zach would ever walk, but with so much determination and spirit, this Tiny Light will likely be able to get around in a walker. As his mom says, “We joke constantly that someone forgot to tell Zach he has CP.”

T.J's Story

Images Captured by Rhonda DeMone Photography

Meet TJ, a. strong little man who always keeps smiling despite everything that he has endured. When TJ was six months old, his parents knew something was wrong. While he wasn't progressing at all, his doctors tried to reassure them that all babies progress at different rates. But by the time TJ was 18 months old, he was developmentally only 6 months old, and after seeing a neurologist, they determined that he had cerebral palsy and a global delay. 

It was devastating for his parents to never hear their child speak, to never know how he is feeling, and to not hear him say the words "I love you."  And through this, they've learned to not take things for granted. They say that the most amazing thing through this has been seeing how children around him have grown more compassionate and curious to learn about children like TJ, and seeing people fall in love with his infectious laugh and handsome smile. His mom says, "I am inspired by just how strong a person is inside of his little body. Despite all the pain he has endured with multiple surgeries, he just keeps smiling. I swear, he even comes into the recovery room smiling!" 

TJ is very close to his best friend, his Grampie, who is the only person who hears what TJ is saying without even saying a word. They have a special bond that simply cannot be explained. 

His parents constantly worry about TJ and what his future holds, but they know that his brother and sister will advocate for him and love him. They hope that he will grow up being happy, healthy, and being accepted by others. TJ's mom sums up her feelings with this quote she often uses to describe her thoughts, "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
And so far, TJ is proving to be the best teacher. 

Story by Jag Nagra