Skyeler's Story

Images Captured by Proudest Monkey Photography

Meet Tiny Light Skyeler. This Tiny Light enjoys running, cuddles and playing hockey and trains. He especially loves hanging out with brothers Hayden, Colyn, Brogan and Parker.

Skyeler was diagnosed with Noonan syndrome in September 2012 – a congenital disorder often referred to as a ‘hidden condition’ as it displays no obvious signs, but consists of problems that may be varied and complex. Skyeler’s parents note that not all of his issues are covered by the Noonan syndrome diagnosis. In addition, Skyeler suffers from chronic constipation, oral aversion, developmental delay, subglottic stenosis, seizures, sleep apnea and vocal cord paralysis.

Skyeler’s parents state that the hardest part of the journey has been seeing their little boy so sick and completely helpless. They are inspired by how he has persevered and how he continues to remain strong and keep smiling.  “He has overcome so much, he gives us the strength to overcome our fears.”    

As a message to other families who have children with similar diagnoses, Skyeler’s parents say, “Don’t go a single day without embracing them in a hug, giving them a kiss and telling them that you love them. Make them know they are the absolute most important thing in life.”

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

Odin's Story

Memories Captured by Affordable Child Photography

Meet Tiny Light Odin. He is a mirror twin to brother Griffen. He also has an older brother, Kingston, with whom he loves to play peek-a-boo!

At 15 weeks of pregnancy, Odin’s mother was kicked in her stomach and was sent to the emergency room with the very real possibility of losing her babies. It was discovered at this time that Odin would have several congenital heart defects. Once born, the full extent of Odin’s condition was able to be determined and he was diagnosed with heterotaxy (RAI), unbalanced atrioventricular septal defect, transposition of the great arteries, double outlet right ventricle, anterior aorta, pulmonary stenosis, univentricular heart, asplenia, laryngomalacia, non-rotational bowels and midline heart.

This Tiny Light has undergone two open-heart surgeries and continues to persevere. He has gained weight since his last surgery and is able to eat by mouth after being fed via an NG tube. This will allow him to be stronger for his third surgery, which is scheduled in a year’s time.

Odin’s parents state that the hardest part of the journey has been seeing the pain their Tiny Light has had to endure. “Not being able to push away the doctors and nurses and take off all the tubes and wires...” has been difficult. As they say, “Never give up hope on how strong your child could be...appreciate every little thing life has to offer because...they will teach you hope.”

Story by Stephanie Bond

Henry & Ben's Story

Memories Captured by Brite Spot Photography

Meet Tiny Light brothers Ben and Henry. These Tiny Lights love playing with balloons, going for walks in their stroller and listening to music. They especially love getting tickled!

Both Ben and Henry were born with spastic quadriplegic cerebral palsy. Ben was born first and was diagnosed at about five months of age. Two years later, Henry was born and started showing similar symptoms at around four months of age. Ben and Henry are extremely dependent on others as neither child can walk, sit, talk, feed themselves or play. Both also suffer from vision problems, constipation and acid reflux.

Ben seemingly has more cognitive issues whereas Henry is more aware of his surroundings. The boys’ parents state, “The hardest thing is when we see other children or hear our friends talk about their children doing things we know our children will never do.” Mom Hayley recalled a tough moment breaking down in a park while watching two young boys run and play.

As a message to other families dealing with similar diagnoses, Ben and Henry’s family says, “I know it feels like you are alone and no one will ever understand what you’re going through but there are others out there and you will be surprised how much your family and friends will pull together to help you raise this child.” Hayley says her Tiny Lights are her inspirations. “They are not sad. They are extremely happy. Sometimes just looking at them all the problems I thought mattered really don’t.”

written by Stephanie Bond