Ryan's Story

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Images Captured by Matt Brennan Photography
www.matt-brennan.com

To view the world from Ryan’s eyes is to look at it with compassion, understanding, and love. This Tiny Light never fails to notice the beauty that surrounds him, taking in the sunsets and sunrises. He is quick to forgive and exudes strength and resilience. Instead of shying away from obstacles, Ryan faces challenges head on. Sports and games top the list for this active 12-year old, especially basketball, road hockey and soccer. Indoors he enjoys board games and video games, but he is also a master sous chef, assisting his mom with meals. 

Ryan was born with a duplicated right kidney and an ureterocell (when the ureter does not implant into the bladder properly and fills with fluid inside the bladder.) When he was just one month old, he underwent surgery to rectify it. After several years of regular visits to BC Children’s Hospital, Ryan’s condition suddenly went downhill. He was rushed to hospital with a severe kidney and bladder infection. Ryan has now had another four procedures, including the removal of half his right kidney. His bladder has become hostile and is creating excessive pressure, resulting in hydronephrosis in both kidneys. “This will eventually lead to kidney failure but miracles happened every day and that is what we hold out for: every good day.” 

Ryan’s journey has been one of hope and courage. While the family faced many hardships in the hospital they did not let it consume them. They looked for the laughter in life amidst the turmoil. “You have absolutely no control over what is happening to your child. There is no way you can take away the pain that they are in.” But they take it day by day; moment by moment. 
This Tiny Light’s mom dreams that “he lives his life as full as is possible.” When she feels less hopeful she thinks of her niece Grace, who has had a kidney transplant, and she is reminded that miracles are possible. 

written by Tara Anderson



Benjamin's Story

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Images Captured by Devon Hall Photographics


Despite everything Tiny Light Benjamin has gone through, he is always happy and full of smiles. This little boy has been a fighter since he and his twin brother Kyle were born at 25 weeks gestation. Benjamin weighed just 1lb 7oz. 


Doctors could not predict the kind of life Benjamin would have after suffering a stroke but parents Gary and Greta wouldn’t give up on their baby boy.  He has had many health challenges including surgery to repair a duct that didn’t close at birth. He also had hydrocephalus which required an endoscopic procedure on his brain.  Benjamin is fed through a G-J tube and he needs help with his breathing due to lung damage. He is on medication for seizures as well. 


Earlier this year, Benjamin became extremely sick from a respiratory virus. He ended up at BC Children’s Hospital for three months and had to be on ECMO (heart-lung machine) for two weeks. Doctors weren’t sure if this brave 4 year old would survive, but he has thrived. “He is back to baseline and even a little further. He is amazing the doctors with his progress since being so sick.” 


Benjamin loves playing with his twin brother and younger brother Devon. He enjoys going for walks with the help of a crocodile walker. He also enjoys music and reading books. This Tiny Light and his positive attitude have been such an inspiration to his family.  The future is uncertain but his parents have one big wish, “Most of all we hope he just enjoys being who he is.” 


Written by Elaine Yong

Gabrielle's Story

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Images Captured by Matt Brennen Photography


Meet Tiny Light Gabrielle.  She is strong, she is calm, and she is beautiful.  Gabrielle enjoys smiling, babbling, watching her brothers play, looking lovingly at her daddy when he holds her, and relaxing at the sight of her mom. 


It was apparent that something was wrong at birth, and from there, the family was sent to the NICU at BC’s Children Hospital for testing.  Within the span of a week and a half, Gabrielle had to undergo test after test until her diagnosis was determined.  Gabrielle was born with I-Cell disease, which is a lysosomal storage disease.  This means that she is missing an enzyme that helps the cells in her body to clean up waste.  Over time, the waste can build up and begin to damage all organs in the body; it is thought that perhaps bone marrow or stem cell transplants may help to delay or correct the neurological deterioration that occurs with I-Cell disease. 


Being told that your new baby daughter has a terminal illness was the worst news they have ever received, but each family member has grown tremendously and the family has become stronger and closer as a whole.  While there are many milestones Gabrielle will likely not hit, her family instead chooses to focus on the ones that she will and to celebrate them fully.  They feel that they have been given a gif, and are hopeful that a recent transplant will greatly improve Gabrielle’s quality of life.


For the future, they will continue to support one another and fill their lives with love, laughter, trips to the beach, and fun with the family.  For Gabrielle, specifically, it is a promise of kisses and hugs non-stop for the rest of her life. 


Story by Kristi Hall-Busque