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

Addison's Story

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Images Captured By brand One Studios
 www.brand1studios.com


 Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.

Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."

Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!

An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."

"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Story by Angela Stephen-Dewhurst

Orin's Story

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Images Captured by Deanna Nilson Photography

 
You would never guess this cheerful and chubby Tiny Light has already undergone two open heart surgeries with another one still to come.  11-month old Orin loves to talk, bounce in his jolly jumper and watch his big brothers play.

Orin’s parents Julie and Steven found out halfway through the pregnancy their baby boy had a serious heart defect – hypoplastic left heart syndrome, or HLHS.  This means the left side of his heart didn’t develop properly and Orin is missing his left ventricle entirely.  He had his first surgery less than two days after he was born.

It was heart breaking for his family to watch Orin go through the ordeal without even being able to cuddle him.  But they found strength through their faith.  “The most amazing thing is the joy and peace in our family through everything.  Orin doesn’t look like a heart baby.”

Aside from one more open heart surgery in the future, this Tiny Light is expected to live a long and healthy life.  “We have the same fears all parents have when dealing with a threat to their child’s life.  But we have peace from God, a strong loving family, and a strong little boy.”


Written by Elaine Yong

Kylie's Story

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Images Captured by Aspectus Photography

Tiny light Kylie is so good at making friends; she is greeted at school every morning with a row of classmates waiting to give her hugs.  This beautiful five-year-old girl has brought her parents so much joy, though the road has been challenging. 

Trevor and Michelle did not get a proper diagnosis for their daughter’s condition until she was almost a year old.  When doctors told them Kylie had Joubert syndrome, they were devastated.  It is a rare genetic disorder caused by the absence or underdevelopment of the cerebellar vermis, an area of the brain that controls balance and coordination.  Effects vary amongst children but include decreased muscle tone, jerky eye movements, difficulties with coordination and cognitive impairment.  “It was particularly hard because the doctors could not tell me if she would walk, talk or if there were cognitive delays.” 

Now Kylie is going to kindergarten and is doing very well.  She can take 22 steps in a row without falling!  She is also learning new verbal words.  This cheerful girl enjoys dancing to music, drawing, laughing and playing pretend games.  Her newest love is her brand new baby sister, Hailey, who was born in December. 

Most importantly, this Tiny Light has taught her family to have patience and never take things for granted.  “Although Kylie’s journey looks nothing like I thought it would, it is more rewarding and beautiful than I could have ever imagined.” 

Written by Elaine Yong

Amber's Story

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Images Captured by Jennifer Boggett Photography
www.jenniferboggett.com


This beautiful Tiny Light will not burn bright for long, but her spirit and determination shine strong. Amber’s condition is deteriorating and she is now receiving palliative care, yet she continues to bravely meet each day with a smile on her face.

Amber has esophageal atresia, a condition where the esophagus does not develop properly. She also has left vocal chord paralysis, left optic nerve atrophy and cerebral dysgenesis. This means she aspirates on oral feeds or secretions, as well as g-tube feeds. Amber has frequent aspiration pneumonia that has caused severe bronchiectasis - destruction of the large airways. She is developmentally delayed and only functions at the level of a 1 or 2 year old.

The goal now is to give her the best quality of life possible, no matter how long. Amber is surrounded by a huge circle of loving family, including grandparents, stepparents, and siblings.  This strong 12-year old girl loves to listen to music and loves to dance, but her favourite activity is playing with her Elmo puppet. Her wish is to meet Elmo and at the end of November, that dream will come true. Thanks to fundraising efforts, Amber and her family are going to a Sesame Street Resort in Jamaica where Elmo will read her a bedtime story and tuck her in at night.

For mom Tara, the journey has not been easy, and her daughter’s worsening condition has meant many tears. But this Tiny Light has also brought so much inspiration, “She has taught me to live life to the fullest and be true to myself no matter what. She helped me see what is important in life and that is family – love and happiness.”


Written by Elaine Yong

Kayla's Story

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Images Capture by Matt Brennan Photography

Don’t underestimate this Tiny Light. Kayla can read, spell and do math the same as any of her Grade 4 classmates.  Her parents describe her as a bright, intelligent child trapped in a body that doesn’t function normally.


By the time Kayla turned 1, mom Christinea and dad Christopher knew something was wrong. But it took a year and a half of countless medical visits and tests before their daughter was diagnosed with Rett Syndrome. It’s a disorder of the nervous system, affecting almost exclusively girls, that leads to developmental reversals, especially in the areas of language and hand use.


It was the most heart breaking news for the family. “We decided that night that she was Kayla and we would not love her any differently.” The path has not been easy, especially because this beautiful girl’s future is unknown. While many children with Rett Syndrome have a normal life span, it is degenerative and they can lose the ability to walk, touch, hold something or swallow.


Now 9 years old, Kayla is one determined girl. She always manages to find a way to get what she needs and wants. She loves to swim, dance and socialize. She enjoys watching movies and playing baseball too. This Tiny Light is an inspiration to her mom, dad and big brother Riley, “We want Kayla to be happy, to love and feel acceptance. She is our silent angel.”


Written by Elaine Yong

Jared's Story

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Images Captured by Jennifer Pearson Photography
www.japearson.com

Tiny Light Jared arrived in this world with quite the entrance and hasn’t slowed down. Despite a completely normal pregnancy, he was born unexpectedly 13 weeks early. Immediately, he had to be taken by air ambulance to a bigger hospital and new mom Beth wasn’t even able to hold her new baby.

Jared ended up staying at the Hospital for Sick Children for nearly a year, battling several life-threatening medical conditions.  His lungs weren’t fully developed and he has gastrointestinal issues. Later, his liver and kidneys failed. This little fighter wouldn’t give up. After more than two months on the liver transplant waiting list, he received his transplant in January 2010. Beth says, “He continues to amaze and baffle some of the smartest doctors and nurses around, as his condition is still undiagnosed.”

It has been challenging for Jared’s parents to watch their baby boy undergo countless procedures, surgeries, medications and tests. But they find strength in the amazing hospital nurses and social workers, and their son, “Jared is our hero. He continued to fight and survive through some of the most intensive medical treatment around. He has his daddy’s strength and his mommy’s determination.”

Jared is now 2 years old and he enjoys discovering new toys and trying new foods, especially at weekly Friday night dinners with his extended family. He won’t go anywhere without his faithful companion, a little lion his grandparents gave him on the day he was born. Though the future is uncertain for this Tiny Light, the family stays positive and cherishes every moment together.

Written by Elaine Yong

Casper's Story

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Images Captured by Asher Images

 With a due date of December 31st, Tiny Light Casper was determined to be one special baby right from the beginning. After a difficult pregnancy, he arrived 14 weeks early, weighing just 1 pound 11 ounces.  Doctors expected him to be in hospital until at least New Year’s Eve, but this “Little Spirit Boy” proved them all wrong. Casper got to celebrate his first Christmas at home with his parents and two siblings.

Casper spent 76 days in the NICU battling several medical issues.  It turns out mom Amy’s placenta was full of infection, which was passed on to her baby. Casper had to fight that off plus deal with apnea and heart spells where his heart rate would drop dramatically. He also endured two bouts of a severe intestinal infection unique to preemies. Through all of it, this little fighter has thrived.

Now Casper is at home, but he has a few major health hurdles ahead, includingeye disease and surgery for two hernias. However, the biggest challenge he faces is an extremely severe allergy to animal protein. This means Casper needs a special formula that is very costly – and not covered by health insurance. The family is struggling to find a way to pay for the extra expenses. With two other children, 6-year old Anastasia and 5-year old Ephraim, who are also special needs, parents Amy and William are stretched to the maximum.

The family’s first photo session at the hospital included one of Casper’s primary nurses Loretta. “Loretta was so amazing with Casper and was like a second mom she just loved our little boy so much.” The upcoming at-home session will include the whole family.

It has been amazing for the entire family to be together through the holidays. There is a big celebration planned to officially welcome Casper home early in the New Year. And though the path ahead is not easy, there is so much love to pave the way. “No matter how overwhelmed we may feel, when we see him we are just in awe of him. We feel like he completes our family and brings so much goodness, joy and light to our lives. We can’t imagine Casper not being here.”

Written by Elaine Yong

Madden's Story

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Images captured by Devon Hall Photography

This Tiny Light is a flirt who can charm anyone he meets.  Madden is only two, yet people are drawn to him and find inspiration in his story. 


Born premature, Madden has an adrenal syndrome.  This means he doesn’t make enough of certain hormones and will require hormone replacement therapy when he is older.  He also has interstitial lung disease, which is very rare in children and causes scarring of the lungs.  All this has resulted in failure to thrive.  Madden doesn’t gain weight or grow like other children his age. 


None of this has slowed Madden down.  He has so much energy, especially for his favourite activities: dancing, swimming and soccer. 


Madden faces a lifetime of doctors’ appointments, procedures and medications.  But his mom hopes her Tiny Light knows no limits, no doors will be closed, no opportunities missed, no passion undiscovered.  “It seems like Madden has been my child forever.  I have a hard time remembering a life without him – he did that to me, captured my heart and soul and I wouldn’t change a thing.” 


Written by Elaine Yong

Maxxwell's Story

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Images Captured by Jenn Di Spirito Photography

 Tiny Light Maxxwell is definitely a charmer. He knows he’s cute and loves getting attention. If this toddler blows you a kiss, that means he really likes you.

Maxx was diagnosed in utero at 18 weeks with heart defects - atrioventricular septal defect  (large hole between the ventricles and atria) and ventricular septal defect, plus a Mitral Valve leak. Then doctors told his parents Cheryl and Tom the amniocentesis confirmed Down syndrome.

Within the first six months of his life, Maxx had three heart surgeries. He finally got to go home from the hospital at 6 months, the day before Father’s Day. Maxx may require more surgery in the future and his parents aren’t sure how Down syndrome will affect his life long-term. They are finding support in the community through various organizations such as the Langley Down Syndrome Resource Group.

Maxx will be 3 years old in January and he is pretty much like any other toddler. He loves music and he even knows how to sign for his favourite things. When he wakes up and goes to sleep, he’s always asking for cookies and milk. “We hope Maxx is accepted for who he is and we hope there will always be someone around who can love, support and take care of him.”

(The Langley Down Syndrome Resource Group meets 7:15pm the last Monday of every month except July, August and December at Christian Life Assembly on 56th Avenue in Langley.)

Story Written by Elaine Yong