Gregor's Story

Images Captured by Rhonda DeMone Photography

www.rdphoto.ca

Meet Tiny Light Gregor. Now that he is able to sit independently, there is no stopping him as he scoots around on the floor. He sure is curious and is always testing to see if you’re watching because he loves to get into everything! A few of this toddler's favourite things to play with are the cupboards, toilets and the dog’s dish. If Gregor was in charge of planning his day it would include: swimming, playing ball, reading books, music, dancing, and of course playing with his big sister Brynn. These two share a very special bond.

Gregor has Down syndrome. When he was born, he had to be resuscitated. His heart had a small hole and he had pulmonary hypertension. His patent ductus arteriosus, a blood vessel that is supposed to close over soon after birth, didn't close. Thankfully, all those issues have resolved over time but Gregor's medical problems did not end there. At 9 months, he became one of the youngest patients ever to be diagnosed with juvenile diabetes. He spent the next few months in and out of the hospital, battling various infections. Just before his first birthday, Gregor went into kidney failure from interstitial tubular nephritis. On top of all that, this brave boy was diagnosed with high-risk acute lymphoblastic leukemia in October 2010. After a year of chemotherapy treatments, Gregor is in remission. Now the three year old is not only surviving, but thriving.

The medical journey has been challenging for the family. Children with Down syndrome are at greater risk of heart complications, especially frightening for parents Duncan and Melanie. Their first son Bergen passed away from a very rare congenital heart disease when he was just eight months old. With Gregor, diabetes means a complicated daily routine of testing glucose and administering insulin. Plus, there are still two and a half years of chemotherapy ahead.

But Gregor is not only surviving, he is thriving. This amazing little man redefines what it means to be a hero. He was the honored hero for the Leukemia Lymphoma Society’s Team in Training campaign for 2011. Gregor has a love for life. He is strong and cheerful, his lips always curled into a smile. Sit with this Tiny Light and be prepared to cuddle! “When he rests his head on your shoulders he reaches up and plays with your hair. He is so full of love for everyone.” 

written by Tara Anderson

Meet Abigail

 Images Captured by Vanessa Balenovich Photography

This Tiny Light loves anything athletic. Her mom is sure that when her treatment is done and she is feeling better she will be right back into soccer and dance!

Abbye has acute lymphoblastic leukemia. This diagnosis was made at when she was three, on Christmas Eve 2010. Her mother’s first reaction was numbness. She remembers being told that her baby was sick and that they were going to make her better. Her focus became making Abbye comfortable as much as it did making her better.

A child life specialist helped her family to explain to Abbye that she was sick and that she would have to take medicine until she was six. This innocent and sweet little lady’s immediate assumption and fear was that she had had too much chocolate milk. Abbye’s independence has diminished. She stopped walking after a lumbar puncture in January. Other things she can’t do because of the PICC line.

Though there are frustrating times for Abbye (resulting in major fits), she has for the most part handled thing in a way that amazes everyone around her. Though she is only four, she has a desire to be involved with her treatments. Despite the chemo and many medications, Abbye still wakes up most days wanting to play.

Abbye’s mom admits that some days it’s nice to just curl up and watch movies in bed with her little girl. She stresses the importance of taking advantage of the days that sick children do have their energy! She looks forward to the time when this part of their family’s life is behind them, and Abbye can enjoy life to the very fullest. While she fears things taking a turn for the worse, she is constantly inspired by Abbye’s personality and strong will. "Whenever I see her I know that I need to be strong, because if I’m not strong for her then everything might just fall apart."

Story by Angela Stephen Dewhurst