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

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.”

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!”

Meet Brogan, Mairin, and Keira

Images Captured By Trevor Allen Photography

Meet Brogan. 


This sweet four-year-old was diagnosed with childhood epilepsy last year. His first seizure was just over a year ago, when he was only three, and it was sudden and completely unexpected. After a month, Brogan suffered another seizure. Within a few weeks he was having multiple seizures a day. 


Within a few months of the first seizure, the diagnosis of childhood epilepsy was made. His parents felt a sense of relief at knowing. Still, this was a terrifying time. The seizures scared Brogan, often causing tears. He has been strong and now has a better understanding of what is happening. He is cautious on bad days, which his parents stress is so important for his safety. And to other parents in her shoes, his mother says: “Epilepsy is terrifying, it’s hard, and it’s frustrating. Getting control over the seizures is difficult but you will you get there.” 


Despite these interruptions, Brogan is a boy who loves trains, cars, and trucks — his favorite movie being Cars! He is excellent at doing puzzles. He is a big help with his little sisters, who he loves so much. 


His parents hope that he will outgrow epilepsy, though it is unlikely. While there was a time his seizures were out of control, medications have helped this. He is now in control and as he gets older he understands what to do while having a seizure to avoid falling or hurting himself. “We try not to think too much about the ‘what ifs’ and take each day one step at a time.”



Meet Tiny Lights Mairin and Keira. 


These sweet twin girls recently celebrated their first birthday! While they share their journey, they each have their own distinct personality. Mairin loves dancing and making faces that make people laugh. Keira is always on the move, and she adds words to her amazing vocabulary daily!


At 20 weeks gestation, it was discovered that there were two babies and that they had TTTS (Twin to Twin Transfusion). Without medical intervention, there was almost no chance of survival for the twins, so their mother underwent surgery that saved their lives. The girls were born at 31 weeks.


The TTTS has come with many other problems for the girls. Both girls have some brain abnormalities, and it still is not certain what this will mean for their futures.  Mairin also had a cloudy, almost white left eye, which has required two surgeries.  She has no vision in this eye, and her parents are hopeful she will not lose the eye.  Because Keira was the donor TTTS twin, she was much smaller and at higher risk for brain damage in utero. She is doing great now, with only slightly delayed motor skills. Mairin, however, is significantly behind in her motor skills.


The twins’ parents worry for their girls, as there are concerns around their brain abnormalities. Still, “there are worse things than limitations.” They find that the girls compensate for their limitations in other aspects. They are happy girls with a loving family. While there have been such big worries for these sweet girls, they have proved to everyone just how strong they are.


Stories by Angela Stephen-Dewhurst