Emma's Story

Memories Captured by AnneMarie Gruden Photography
​www.amgphoto.com

Tiny Light Emma is a strong, feisty little girl who just celebrated her first birthday. She likes to babble like a toddler with her two-year old brother. Their mother sometimes laughs as she wonders if they are plotting against her.

When Emma's mother was 31 weeks into her pregnancy, an ultrasound showed a cyst in the area of Emma's ovary. Postnatal ultrasounds made the doctors think it was a cyst on her small bowel that would need to be removed. However, during the laparoscopic surgery, they found that it was an ovarian cyst after all. They decided not to remove it, but to continue to monitor it by ultrasound instead.

The most recent update brought very good news for Tiny Light Emma and her family. A follow-up ultrasound three months after the surgery showed the cyst was gone...just like that. After hearing about so many worst-case scenarios, Emma's mother is relieved that her little girl came out of it relatively unscathed. "Most incredible thing ever," she says "We certainly came out of this feeling very blessed."

written by Karis Sengara

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

Matteo

Tiny Light Matteo just celebrated a big milestone – one year post treatment for cancer. This little boy is full of smiles despite all the challenges he has faced.

Matteo was in acute renal failure when he was diagnosed with a tumour on his bladder at 16 months. He was supposed to undergo a year and a half of chemotherapy, but just three months later, he relapsed with a lesion to his prostate. A new round of chemo mixed with radiation wasn’t working so doctors decided to remove both his prostate and bladder. There were painful complications following the surgery and aggressive treatment that have had permanent side effects, but Matteo got through it.

Now Matteo has a urostomy, a urine bag much like a colostomy, but he has learned to walk again and has started speaking.  He enjoy going to the playground, swimming with his friends, and shopping. This Tiny Light has taught his family what’s really important. “Never sweat the small stuff. Matteo is and always will be my hero.”

Written by Elaine Yong

Emma's Story

Images Captured by Captivating Photography by Sarah West

Tiny light Emma is a sweet six-year old who loves to dance like a
ballerina and play with her Lalaloopsy dolls. She is very artistic and
enjoys colouring and doing crafts. While she had a challenging start to her
life, she has shown incredible strength and brings joy to those around her.

At 32 weeks gestation, Emma was diagnosed with a right congenital
diaphragmatic hernia. Her diaphragm did not close while in utero, allowing
her liver and bowels to rise into her chest cavity. This compressed both of
her lungs and pushed her heart to the left. Emma’s parents were told that
if their daughter made it through birth, she would have only a 10%
chance of survival. After three days in the NICU, she underwent
life-saving surgery, which was a success. However, a subsequent
procedure when she was 13
months old caused a bit of a scare. A doctor gave her too much sedation and
they almost lost her but tough little Emma bounced back with no side
effects. In addition to her CDH, Emma also has pectus excavatum, which
causes her chest to appear caved-in (due to abnormal growth of her ribs and
sternum). This will be repaired when Emma is in her teen years.

Emma still struggles to gain weight and needs the help of a feeding tube.
She is medically fragile and her immune system is compromised. Emma’s
future is unknown, as every individual born with a CDH is different. There
is a risk that she may re-herniate, have more difficulties with her bowels,
or develop scoliosis, but her parents stay positive and choose to focus on
what is best for their daughter.

Story Emily Harrison

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

Dillan's Story

Memories captured by Eye for it Photography

Tiny Light Dillan is a brave little four year old who has a fighting spirit.  He loves to race, dance, play with his cars and trains and laugh with his family.  He is quick to smile, even after feeling pain and he likes to be silly, even when he is at his sickest.  Dillan loves superheroes and is an ardent protector of his little sister Sophie.

Dillan was diagnosed with Hirschsprung’s disease at three weeks old, although the illness was evident from the day he was born.  This condition affects the large intestine - the nerve cells necessary to enable a normal bowel movement have not developed.  Over three surgeries, Dillan’s disabled colon was bypassed and he received an ileostomy which releases his waste and allows time for the nerve cells in his colon to develop.  Hopefully in the near future, he will have surgery to reconnect his intestines and ideally continue life as a normal little boy.

Now in preschool, Tiny Light Dillan struggles to understand why he has an ostomy but is otherwise doing well.  His parents await his next surgery and hope that will be his “last surgery ever”, though some children with the disease often suffer residual health problems.  His mother says, “My dreams are that he understands what has happened and helps spread awareness and knowledge, and that he keeps loving the way he does.”

Written by Angela Funk

Rukia and Orihime's Story

Memories Captured by EYE:58 PHOTOGRAPHY
​

Tiny Lights Rukia and Orihime are always happy, especially when they get to go shopping with their bags. The twin girls also love putting diapers on their dolls, and now they’re getting a chance to practice on their newborn baby sister Okami. They just celebrated their third birthdays – a major milestone parents Cindy and Amilcar weren’t sure they’d get to see.

The twins were both born with heart conditions. Rukia was diagnosed with hypoplastic right heart – essentially half a heart – along with several other heart defects. Orihime had critical aortic stenosis with bicuspid valve and doming pulmonary valve. Both girls spent months in the hospital undergoing numerous surgeries and procedures, battling several complications.

Rukia has one more surgery ahead in the near future, and in a year or two, Orihime will also undergo another procedure. But these girls aren’t letting that slow them down. They started preschool this year and go through daily occupational and speech therapy. The twins love to sing and dance, colour and play tag. The family says their Tiny Lights have taught them to take things one day at a time and appreciate every moment. “Seeing their strength when they are going through all of their surgeries gives us the inspiration, the strength and the faith that they will always pull through.”

Written by Elaine Yong

Ricky's Story

Tiny Light Ricky is a rare gift indeed.  He has a condition called Ring Chromosome 18, which is shared by only a small handful of others worldwide.  Richard faces his challenges with a strong will, which he needed right from birth.

Born ‘blue’ with no heartbeat, Ricky fought for his life while his parents, Amber and Joe, waited four long hours to see him.  Even after he was stabilized, they were told their son would probably only live a few days.  On the day they were supposed to take him home, Amber was told about her son’s rare diagnosis.  Heartbroken and scared, she asked what this meant for Ricky’s future but his doctors couldn’t answer, as no two Ring Chromosome 18 patients are alike.  

This Tiny Light has had many developmental challenges, but he’s beaten the odds his doctors had given him.  Today, three and a half years after his birth, Ricky has learned to walk with the aid of a walker and is looking forward to starting school.  He loves books, toy cars, music and making people laugh by making funny faces.  As Amber says, “The worst part is not knowing what to expect or how to be able to make everything ok for him…the most amazing part is seeing how strong he is.   Seeing the determination in my son everyday makes me so proud.  Everything about him inspires me.”  

Written with Love by 
​Jayne Akizuki
​

Chloe & Cameron's Story

​Images Captured By Angie Chauvin Photography

Tiny Lights Chloe and Cameron have faced challenges right from birth. The siblings,
along with brother Carter, are triplets, born early at 31 weeks. They spent 42 days
in the NICU before coming home healthy. But after their second birthday, parents
Valerie and Dave were concerned about their development. Within a few months
at daycare, Carter’s speech developed quickly, but that wasn’t the case for Chloe
and Cameron. Turns out both of them are severely autistic and Cameron also has
juvenile arthritis.

The diagnoses have changed the family’s lives forever. There are numerous medical
appointments that require traveling, plus the mounting costs of special programs
such as therapeutic riding and swimming. Valerie has had to take on two extra jobs
just to help pay the bills.

Through it all, Chloe and Cameron have taught their parents so much. They are non-
verbal, but manage to get what they want when they want. These Tiny Lights love
snuggling, playing on the computer and helping in the kitchen. They are willing to
learn something new everyday. “We keep the kids very involved and will continue to
do so. We want them to experience life to their fullest potential!”

​Written by Elaine Yong

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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