Help fight DIPG
What is DIPG?
DIPG stands for Diffuse Intrinsic Pontine Glioma. It is a rare and aggressive form of brain cancer. The tumor is located in the brain stem and affects the area of the brain called the Pons. This area of the brain is responsible for all of the body’s major functions such as breathing, blood pressure, heart rate to name a few. As the tumor grows, it slowly puts pressure on the nerves controlling the body’s functions and slowly takes away each of these functions. Through the entire time, the patients still maintain their cognitive functions leaving them trapped in their own failing bodies! It is absolutely horrible for the patients and for the families watch their little ones go through something like this!!
Aleksa lost her mobility, her hearing, her speech. She only had the ability to move her left arm and her head and we were only able to communicate with here by typing on a keyboard connected to her smartphone and tablet. She was slowly losing her vision before she passed. As sad as we feel about her passing, we know that she had no quality of life and we know that she was finally at peace and not suffering anymore. We could not then and never want to imagine a day that she would lose her vision too!
There is very little research on this cancer since it only affects approximately 30 kids in Canada each year.
As parents whose daughter recently passed away from the terrible disease, it is difficult to think back at what it did to her but we feel it is important for people to understand how bad DIPG really is. We think that if we could rate the mental agony that these children endure, it would significantly outweigh the fact that only a small number of children are diagnosed each year. SOMETHING HAS TO BE DONE!
This is why we have created a foundation through McMaster’s Children’s Hospital in Hamilton, Ontario in honour of Aleksa and with the aims of raising money for research directly on DIPG. All donations go 100% to Dr. Singh’s lab at McMaster where they are doing research on DIPG. While Aleksa was with us, we made it to $10,000 and since she has passed, we are now at over $19,000. Our goal is to reach $100,000.
Link to Aleksa's Foundation:
Please visit the link below for Aleksa’s Foundation: