Nolan's Story

Images captured by Lynne Williams Photography

It’s not about limitations, it’s all about possibilities for Tiny Light Nolan and his parents. Nolan just turned 4 years old and he is thriving, proving all the doctors wrong with his determination and resilience.

Nolan was born premature at a wee 3 pounds 13 ounces. He spent more than six months in the NICU battling a number of complications including stop-breathing episodes, which required resuscitation. He has since been diagnosed with several conditions including Cerebral Palsy, low muscle tone, epilepsy and global developmental delay. This has meant four surgeries and countless medical appointments.

While it has been heartbreaking for Anna and John to see their son in pain, they focus on the small victories every day. “Nolan is our miracle baby. We do not define him by his diagnosis and truly believe he is meant to be as he is.” Although he can’t talk, this resourceful little boy has been able to find ways to communicate. He rolls his eyes away when he wants you to stop, a shoulder shrug means he’s full, and a cluck of the tongue is for a sip of water.

This Tiny Light is all smiles when enjoying a dance with mom or dad. He also loves the swings and playing in the water. No one knows what the future holds for Nolan, but this family is firmly focused in living in the present. “Take each day, one at a time, and be thankful for the little moments and little successes because when you look back, they may be the big ones.”

Sofie's Story

Images captured by Mellissa Receveur Photography

If you could measure hope on a scale, then darling, little Sofie would have weighed in at much more than her 586 gram birth weight! Sofie was born 16 weeks premature but started her fight for life much earlier than that. At 22 weeks gestation, her mother started to dilate, and three days later, her water broke. Sofie's parents were told that there was no hope. She showed them all that it was up to her! She hung on for nine more days and was born via C-Section at 24 weeks. She went on to amaze everyone during her 140 day stay in NICU, with her tenacious personality being exhibited while she was pulling out her breathing tube and feeding tubes. I can just hear her at two years old telling everyone, "I can do it myself!”

So at her corrected age of five months, this Tiny Light has fought her way through three months on a respirator, a round of antibiotics, fives blood transfusions and numerous X-rays. She has passed the hearing test, avoided laser eye surgery after a worrisome bleed, and has taken well to nursing and the bottle. It’s no wonder this little spark brings smiles to everyone she meets! Who can resist a girl with spunk?

Grateful for the professional support they have had, her parents wish to remind other parents that while in the hospital, “you are your child’s voice – stand up for them by being informed and strong."

Sofie's mother hardly dared hope for the life of her little one before her birth. Now Sofie shows her that there can always be hope. She inspires her Mother with a strong will and determination to fight for each milestone. Sofie's Mom says, “You can never have a bad day or feel sorry for yourself when you just have to look at her and see a beautiful happy girl who grows in front of your eyes; smiling, happy, laughing, chatting and watching hockey with her Dad."

This amazing little fighter is not out of the ring yet, with a compromised immune system and a barrage of therapies to get through, her parents believe that, "the Sky is the Limit!"  They will continue to challenge and encourage her with hopes that their baby will grow up to be a "strong, bright, independent girl who has big goals and dreams." 

Story By Francis Cawley

Tiny Light Journey

Images Captured by Jennifer Kapala Photography

Tiny Light Journey has the perfect name because his first few months of life have already been quite the journey. Doctors gave him only a one in five chance of surviving past the first few days and now he is already five months old.

The diagnosis in utero of Tetralogy of Fallot (a heart defect) and an extremely rare genetic disease - Diamond Blackfan Anemia (DBA) - was devastating for parents Doug and Coreina. Journey arrived early at 33 weeks after an in utero transfusion procedure put his mom into labour.

Since then, this tough little baby boy hasn’t stopped fighting. He spent his first two weeks of life in the NICU and then he was transferred to the PICU. There have been countless tests, procedures and medications, with heart surgery in the future. He is surrounded by so much medical equipment so any cuddling time is very precious.

Most patients with DBA suffer severe chronic anemia due to bone marrow failure. The condition can sometimes be managed with intensive drug therapies or repeated blood transfusions – both options have multiple potential side effects. The only cure for DBA is a bone marrow transplant, also fraught with risks and complications.

While the family continues to hope there will be a cure for DBA one day, they are learning to appreciate the simple things in life. Tiny Light Journey has brought so much, “We realize what a great family we have and just how strong we are together. We know that with each other, we will all make it through this journey.”

Written by Elaine Yong

Meet Adam

Images captured by End Of The Road Photography

Meet Adam. In only two short years this Tiny Light has already taught his parents so many things. They’ve learned to trust in God, to ask for and accept help, and that no matter how hard things get, the world keeps on turning.

When Adam was born seven weeks early, they knew right away something wasn’t right. Five days later they were given the diagnosis and they struggled to deal with the news and the many emotions attached to it. Their baby had Down Syndrome and they were in a fog of confusion for the next few weeks as Adam started his life in the NICU. 

Looking back his mom wishes things could have been different. That acceptance could have come faster. "I feel a bit sad that Adam’s first two years are over. Sad that I didn't enjoy his babyhood as much as I should have. Sad that I wasted way too many tears, and hours and weeks of worry... when I could have replaced those tears and worry with love. Simple PURE and beautiful LOVE. “

Adam gives the best smiles. He loves to wave and wave and wave. He also loves to clean up. Anything and everything goes in the garbage:  his Daddy’s wallet, Mommy’s keys or his big sister’s camera! 

“We know that our little man came to complete our family. We love him with all that we have. We look forward to teaching him... and even more importantly learning from him."

Today they are looking forward to all the excitement and challenges that their future holds. Their greatest hope for ALL their children is their happiness. Their greatest goal is to do right by them.

 Story by Sue Renaud