Campbell's Story

Memories Captured by Amy Symes Photography

Meet Tiny Light Campbell. He’s four years old and started school this year. Campbell uses a wheelchair and works very hard to walk in his Rifton and Kaye walkers. Campbell enjoys being with others and absolutely loves music and dancing, especially with Ellen at the beginning of her talk show.

Campbell was born prematurely and was delivered at only 24 weeks. He fought constantly to stay alive, and there were many occasions when his parents, Joanna and Bertran, were not certain if Campbell would live. After the fourth month in hospital, and five surgeries to try to save his eyes, his parents were told that Campbell would be blind. One month later, they were told that he’d also be deaf. Campbell has now been home with his family for three years, but the journey is only beginning. One year ago, it was confirmed that Campbell has cerebral palsy and may never walk. 

“We expose him to many things,” says Joanna, “bike rides, cross-country skiing, camping, swimming, yet we know that with his challenges he’ll be limited. He’s a remarkable boy with so much love and potential. He lifts our spirits and shows us the way all the time, but I still feel, at times, that he’ll be left out of many opportunities, and that truly breaks my heart.” She adds, “We are proud of him and who he is. He’s taught us so much in his four years of life. He’s a very funny little boy and has a smile that will warm any heart, and melts mine.” 

Written by Lori McLellan

Lilly's Story

Meet Tiny Light Lilly. She loves jigsaw puzzles, colouring, reading, playing with sand and just relaxing while watching Treehouse TV. She always has such a positive attitude and is always in a good mood. Her parents say her smile and hugs are the best in the world. It’s hard to believe this happy little girl has been overcoming challenges since the day she was born.

Lilly was born at 30 weeks gestational age, and two months later her parents were told she had cysts in her brain due to a brain bleed. These cysts were removed quickly but Lilly’s parents were warned that the cysts may have caused damage and that their sweet baby girl could have Cerebral Palsy. When Lilly was 10 months old her parents noticed she wasn’t hitting physical milestones like other children her age. At her one-year check-up they were given the diagnosis they’d feared. Cerebral Palsy. They were devastated at first. They’d known it was a possibility, but were hoping for the best since Lilly was doing so well in all other aspects.

It’s been a long bumpy road but Lilly’s made incredible progress; she’s able to walk independently with the help of her AFOs (her super shoes). As well, Lilly requires glasses and must have Botox injections every four months, which her parents say is the hardest thing for them in all of this because they hate seeing Lilly in pain. The devastation they’d once felt upon hearing the diagnosis has all but faded now. Lilly’s parents feel blessed to have her in their lives, saying, “Since Lilly was born, our outlook on life has changed completely. What seemed important before has now little to no meaning at all. She gives us strength to fight even when we have no strength left. She makes us see the world through her eyes and life is so much better that way.”

 

Story written by: Adrianna Tailleur

Isabelle's Story

Memories Captured by Teagan Photography
www.teaganphotography.com

Tiny Light Isabelle brightens up everyone’s day with her big smile. She loves music and shakes her arms and legs with joy when she gets to dance with her mom.

Isabelle has cerebral palsy and experiences many seizures. Unfortunately, each time she has a seizure, her development takes a step back and often, she ends up in the hospital intubated. But this seven year old just keeps up her happy attitude and never cries.

Isabelle enjoys going to school with the help of an aide. She also loves playing with water, whether it’s bath time, swimming or standing at the sink. This Tiny Light is the sweetest girl in the whole word, according to mom Laura. “Always have hope and keep your head up high. It is hard work but your child is your life and you have to do what is best for them.”

Written by Elaine Yong

 

Savanna & Kaylee's Story

Images Captured By Rebecca Sehn Portrait Artist

Meet Tiny Light twins Savanna and Kaylee. These sisters love going to preschool and taking part in therapeutic horseback rides. They especially love to have fun with big brother Ryder and mom and dad.

The twins were born three and a half months premature and only weighed two pounds each. Both Savanna and Kaylee suffered interventricular brain hemorrhages and white matter brain damage, resulting in cerebral palsy. Savanna has been more severely affected as she is unable to walk, has hip dysplasia and requires two surgeries.  It is difficult for her to sit unaided for an extended period of time. Kaylee required heart surgery at three weeks old and will require one more surgery in the new year.

Mom Nicky notes that it was heartbreaking to hear the girls’ diagnoses and the challenges that they would face. She credits Savanna and Kaylee’s “hard work, dedication, happiness and joy” as the most inspiring part of their journey.

Although the road ahead will present difficulties, Savanna and Kaylee have already overcome so many obstacles by participating in alternative therapies. Savanna is currently able to use a walker and Kaylee is participating in physiotherapy. Nicky acknowledges that their progress from birth has been “unthinkable” given the circumstances and attributes a great deal of their success to alternative therapies including horseback riding. As she says, “There are many alternative therapies out there that really do help, don’t give up searching.”

Story by Stephanie Bond

Aiden's Story

Images Captured By Katie Harding Photography

Meet Tiny Light Aiden. This Tiny Light loves to play with blocks and cars. He also loves going on walks and car rides and snacking on the odd Timbit.

Aiden was born 15 weeks premature and weighed just 1lb 12ozs. Shortly after birth, he was diagnosed with bronchopulmonary dysplasia – a lung condition that is caused by the abnormal development of lung tissue. He was also subsequently diagnosed with mild cerebral palsy, retinopathy of prematurity, sensorineural hearing loss and autism. This brave little boy has battled infections, several surgeries, severe visual impairment and motor skill challenges but has persevered and is determined to live life to the fullest.

It’s been a tough journey for parents Deidre and Scott. “Never knowing what the next doctor’s appointment will bring, constantly wondering will Aiden ever talk, will he ever use a fork, will we ever get to hear him say ‘I Love You’” - those have been the most difficult realities.

Despite the fact Aiden has medical challenges, he is a very happy child and inspires his family with his progress, accomplishments and attitude. As a note to other families, Deidre and Scott say, “Live every day to the fullest and don’t allow the diagnoses to be a negative, turn it into a positive, allow it to be a learning experience for you and your family, allow your child to teach you as much as you will teach your child.”

Story by Stephanie Bond

Jacob's Story

Images Captured By Photo Tales by Carm

This Tiny Light is known to his parents as their "Unstoppable Jacob". The five year old is “terminally ill but terminally cute,” according to mom Ali. He loves to listen to music, sing, watch Elmo and cuddle.  He will kiss anyone who comes close and share his infectious laugh with everyone.

Jacob was born at 24 weeks gestation weighing only 710 grams. Three days later, he suffered a devastating brain bleed. The following weeks and months brought a host of diagnoses - long term brain damage, hydrocephalus, bi lateral cysts, leukomalacia, severe cerebral palsy, chronic lung disease, inability to swallow, visual and aural impairments that have led to both near blindness and total deafness. Jacob spent the first 11 months of his life in hospital, and has been back numerous times, including 30 invasive surgeries. He needs 24-hour monitoring, is strictly tube fed and requires oxygen at night and often during the day. Doctors have told the family to prepare for the worst several times, but Jacob keeps fighting and defying the odds.

Jacob started to smile and laugh when his parents were first able to bring him home from the hospital and he hasn’t stopped since.  “Jacob’s amazing! He totally blows me away, every day!” says Ali.  “His love is pure, his joy is overflowing; it is awesome to witness and live with…I hope I can learn everything he is here to teach us about life and love and what’s important in the world.”  The Tiny Light's future may be uncertain, but the family doesn't dwell on that. “Jacob is loved and he loves and there is nothing to fear when you totally let go and just be in every moment.” 

Story written by Angela Funk