Sarah's Story

Images Captured by Melissa DePape Photography

www.melissadepape.com

The first few weeks of Sarah's life were spent in the hospital because she was unable to eat on her own.  A genetic test was done after she started missing milestones and an answer was found to the concerns her family was having.  Sarah was diagnosed with a rare chromosome deletion which has resulted in global delays and feeding obstacles.  Unfortunately, there are no other documented cases of the same deletion to date.

Since her diagnosis, her family has learned she also has a seizure disorder.  Sarah has started Anat Baniel Therapy, which has resulted in positive changes both physically and cognitively for her.  Through online groups, her mom has met other parents who have children with unique diagnoses, making the journey a little less lonely.

Now, at three years of age, Sarah can walk and works hard to keep up to her big sister Lily.  She is learning sign language and loves to attend preschool.  Sarah absolutely adores Lily, is extremely affectionate with her kitty and loves to dance.  Just like all other little girls, she manages to get herself into trouble - she can often be found climbing on everything. Sarah has recently found her independence; learning how to communicate her strong opinions however she can. 

Though it has been tough for Sarah's family to deal with an unknown future, this Tiny Light makes it all worthwhile. "As each month passes and we see her continue to grow and change, we are inspired by her smile and hard work. We will continue to work hard ourselves to supper her wherever her dreams take her."

written by Kristi Hall-Busque

Benjamin's Story

Images Captured by Melissa DePape Phoography

www.melissadepape.com

Benjamin is a three year old boy who continues to defy all odds against him and light up the lives of everyone who meets him. He challenges family, friends and others who come into contact with him to look at disability through his eyes and see just how "normal" someone with a disability truly can be.
 

At sixteen months of age, Ben was in the Stollery Children's Hospital getting an NG tube put in to address his nutritional concerns; his neurologist heard we were there and came to visit. She broke the news that changed our lives forever. Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3 (PCH3). What this meant for Ben was a low life expectancy of eighteen months and not much hope for development. We were devastated and immediately took to the internet to "Google it" against the advice of our doctors. Ben is one of only five individuals (four living) to be officially diagnosed with PCH3. He is our little anomaly.
 

Now, at three and a half, Ben is thriving and generally healthy. He experiences global delay in most areas but is determined to overcome his own barriers. He is able to communicate using sounds, cries and the occasional word - most often calling for Dad. While he has extreme challenges, he is a willing participant in his day program and loves the time he spends with his Developmental Specialist provided by the GRIT program. The biggest obstacle and fear for us as his parents has been ensuring and feeling confident in the decisions we make for his future. Our goal is to determine what is best for him based on his reaction and comfort level in a given situation (and desperately hope we are able to read his signals accurately). We choose not to focus on his life expectancy and what he cannot do, instead living each day just as any other family would. We choose not to plan our lives around Benjamin but instead choose to plan ahead for him so he can be included the same way as his siblings.
 

Whether it is rough housing, watching Waybuloo over and over or spending time with his grandparents, each day with Ben is a great one. Both his sisters adore him and he brightens the lives of our family and friends with his infectious giggle and twinkling eyes. We feel very fortunate to have Benjamin as our son.

Story Written by Benjamin's mother Kristi Hall-Busque

Caleb's Story

Images Captured by Petra King Photography

www.petrakingphotography.com

This is Tiny Light Caleb. Although he and little sister Hannah are eleven months apart, they are best friends and are often mistaken for twins. Full of energy, Caleb keeps his parents Sharon and Derrick on their toes.

During mom's eighteen week routine ultrasound, the technician discovered some “red flags and indicators” that suggested the baby may have Down syndrome as well as other medical issues.  A follow-up specialized ultrasound was booked and the realization of the news starting sinking in.  The entire family spent much time praying for a miracle. Their prayers were not in vain; the doctor reported the initial worries about small holes in their baby’s head and heart were amiss and he stated he had never seen a healthier heart.

In January of 2010, the family gave birth to their second daughter, Grace.  Sadly, she was born very sick and was taken off life support only thirty-one short days later.  During that time, Grace taught the family more than a lifetime of books or schooling ever could.

Now at the age of four, Caleb is one of the greatest joys in his family and friends' lives.  The also celebrated a new addition to their family when Zachary was born in October.  While it took a long time for the family to accept Caleb’s diagnosis - out of worry for the struggles he may face - their Tiny Light has taught them so much, "God is revealing to us everyday the joy and love Caleb has to offer. He has truly demonstrated what love, mercy and grace are really all about."

Story Written by Kristi Hall-Busque

Meet Maggie and Molly

Images Captured by GingerSnaps Photography

Molly loves to play dress up, play with her babies, make crafts, sing and dance; her sister Maggie is also a fabulous dancer and singer.

Molly has a general diagnosis of hypotonia with an additional diagnosis of Spastic Paraplegia, although it has yet to be confirmed.  A major frustration for her parents was the lack of further opinions on Molly’s condition, resulting in sleepless nights waiting for test results and not knowing whether she was living with a threatening illness.  It has been an ongoing process trying to determine where Molly’s symptoms are stemming from.

Maggie’s diagnosis is Autistic Disorder; their reaction to this was sadness and disbelief in the beginning.  Their parents have experienced every emotion from fear, then relief.  Sadness then gratitude. Anger then joy.  The hardest part of Maggie’s journey for her parents has been wondering what the future holds for her.  “You imagine your children’s lives and never in a million years do you expect to have to think about saving for them because they may not be able to support themselves.”

As their daughters overcome each individual challenge they are faced with, Molly and Maggie’s parents are amazed at how they are each thriving and what phenomenal little people they have become.  They love to hug each other, a tell tale sign to their mom that everything will be okay because no matter what, they will always have each other.  Each day, Molly and Maggie surprise their parents at what they can accomplish, giving them tremendous hope. 

Advice they have to give: Never, ever blame yourself or feel guilty; you have to learn how not to feel sorry for yourself or for your children.  They also feel that they have learned a lot about themselves, their marriage and their relationships with their extended family.  Instead of focusing on the negative, the girls’ family choose to celebrate the fun times which for them means trips to Disney World.   “Wish it, dream it, do it!”

Story by Kristi Hall-Busque

Meet Little Darius

Images Captured By Rhonda Steed Photography

Meet Tiny Light Darius.  Born only this past March, Darius has already overcome many obstacles.  Each day, he demonstrates to his family and friends his willingness to fight and grow stronger.

Darius was born prematurely at twenty seven weeks, both him and Mom experiencing many complications along the way.  His doctor expressed serious concern when his white blood cell count came back high, and he was put on a Continuous Positive Airway Pressure (CPAP) machine to help regulate his breathing.  At one month of age, moisture was found in his lungs and doctors continue to clear them out.  It is uncertain as to whether or not Darius will experience difficulty in areas of development in the future.  

The hardest part of their journey so far has been the first few days when Darius needed to be isolated; his parents were only able to touch him through the holes of the isolette and were unable to pick him up.  He was on oxygen, and had many wires and tubes helping to improve his health.  At the time, Dad was also working in Lethbridge and was only able to make it to Calgary to see them on the weekends.

His parents have learned that asking questions and being willing to do anything for your child will help bring you closer to your baby sooner.  Support from family and friends helps Darius’ parents keep strong and stay positive when they are feeling anxious.  

Darius’ test results continue to come back positive, alleviating some of his family’s fears.  Even though Darius is still small for his age, he has started cooing and kicking while playing in his crib.  He also enjoys checking out the scenery around him.  His family is hopeful that Darius will catch up and pass all of life’s milestones; they have faith that he will grow up to be a very bright child. 

Story written by Kristi Hall - Busque

Jayden's Story

Images Captured by Caity McCulloch Photography

Here is Tiny Light Jayden.  He is the best snuggler ever! Jayden loves playing and listening to music, swinging on his swing-set, building with his blocks and going swimming.  His mom admires his happy, loving personality and is unsure how he manages to keep a smile on his face considering the challenges he has to overcome daily.  Jayden is her inspiration.

Jayden was born on March 31, 2010; his parents already aware that he had Down Syndrome after an ultrasound showed indications of soft markers.  A visit to a specialist and further testing confirmed the diagnosis, so mom did what she could to be prepared and began researching everything possible on the disorder.  When Jayden made his arrival, the family received some great news discovering that he did not have the common heart issues associated with Down Syndrome.

However, four days later, when Jayden still had not had a bowel movement, things took a turn for the worse.  The family was sent to Victoria General Hospital where they remained for three weeks as Jayden had further been diagnosed with Hirschsprung’s Disease.  In Hirschsprung’s Disease, the nerves from part of the bowel are missing which means material cannot be pushed through, resulting in blockage.   In August of 2010, Jayden had surgery removing one a half feet of his colon and since then, has been thriving and doing well but still continues to experience discomfort when he needs to have a bowl movement.

While the hardest thing about their journey has been watching Jayden go through so much pain, the most amazing part is how much his parents have learned about themselves.  They now view children with special needs in an entirely different light and feel their child is no different than any other child.  Jayden has taught them a great deal about life; about being patient and ensuring that you do not lose yourself as a parent a long the way.  When mom is having a rough day, she looks at Jayden’s beautiful blue eyes and big smile, and cannot help but to smile herself.

For the future, his family hope Jayden will find independence, potentially find employment and continue to be as accepted and loved as he is now.

Story by Kristi Hall-Busque