Sevanna's Story

Memories Captured by Eye 58 Photography

 

Meet Tiny Light Sevanna. This sweet, caring six year old is adored by everyone who knows her. She loves to dance and sing and is a whiz at remembering song lyrics. She also enjoys going to school, swimming, colouring and playing outside with her siblings and neighbourhood friends. Despite the fact that she has been through so much already, spending nearly half of her life in the hospital, she continues to demonstrate her incredible fighting spirit and love for life. 

During a routine ultrasound, Sevanna's mother, Ricki, was told that she would be having a baby girl, but that something was wrong with her heart. When Sevanna was born, she was diagnosed with multiple heart defects: only one ventricle with a severe VSD (ventricular septal defect), pulmonary atresia, an ASD (atrial septal defect), a PDA (patent ductus arteriosus), L-TGA (left-side transposition of the great arteries) and a missing mitral valve. Sevanna’s lungs are also reversed (situs ambiguus) and she was born with no connection from her aortic arch to her lungs. What is unique about Sevanna's case is the positioning of her heart. It sits to the right at a severely tipped angle and is also upside down and backwards. 

She’s the only child in North America diagnosed with both hypoplastic left and right heart syndrome because the walls in her heart chambers have the characteristics of both sides (smooth and ripply walls). Her official diagnosis is “dual indeterminate hypoplastic left and right heart syndrome.” Unfortunately, there were also many complications during her heart surgeries, resulting in vision loss (she is blind in her left eye), kidney damage and moderate brain injury. She’s been diagnosed with epilepsy and ADHD as well.

Sevanna's health has been stable for over a year now, though she continues to be seen by many doctors and specialists. Within the next couple of years, she’ll require a valve replacement and, in her teens or early 20s, she’ll receive a heart transplant. For now, Sevanna will continue pursuing her dream of becoming a singer and dancer, singing with her mom daily and taking ballet lessons. 

Story written by Emily Harrison

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

Aisley's Story

Memories Captured By Eye 58 Photography

Tiny Light Aisley has an energy that cannot be matched. This bubbly, outgoing and funny almost four-year old little girl just keeps going, no matter how hard the road ahead. Now that her hair is growing back, you would never know she’s been fighting cancer for more than a year.

Aisley was diagnosed with acute lymphoblastic leukemia the week before Christmas 2011, just two months after welcoming her baby sister Emerson into the family home. Her parents Curtis and Alison were devastated. “We didn’t know what to expect. When you hear the word ‘cancer’, you think the absolute worst.” They had to uproot the family from their home in a small Alberta town and move to Calgary for Aisley’s treatment, which involved painful surgeries, bone marrow aspirations, and terrible side effects from the chemotherapy.

Now Aisley is in the maintenance phase of chemo. She takes daily medication at home with monthly hospital appointments. She enjoys going to preschool. She is a born performer who loves to dance and sing. Aisley is also a great big sister to Emerson. This Tiny Light has shown her family she is pretty incredible. “I hope one day she can visit a newly diagnosed little girl and tell her she was once in her shoes. And if she fights hard enough, she’ll be strong and healthy and ready to take on the world too. Although if I’m wishing for things, I’d rather there never be another little girl or boy diagnosed with cancer.”

Written by Elaine Yong