An open letter to the Canadian government by a grieving mother
Dear Canadian Government, My name is Brittany Gaudet and I am a mom of three beautiful girls. My oldest daughter is Ava. She passed away Aug. 30 this year. As you probably know already in your records. As it seems you only know the bad stuff and not the helpful stuff.
Our daughter was diagnosed in June 2016 with a rare genetic neurodegenerative disease called Batten Disease CLN2. She was just 4.5 years old when diagnosed and was 5.5 when we lost her. She was diagnosed with epilepsy the year before that.
We were also down the path of having an autism diagnosis since rare diseases are extremely hard to diagnose. So usually a child endures multiple wrong diagnoses until the right one is found. Our daughter had trouble with speech, and was extremely clumsy. She had behavioural issues as well as extreme night terrors, which we now believe to have been seizures.
She had stomach issues from day one. Our daughter lost her ability to walk, talk, eat and see. She had seizures multiple times a day, she was bed ridden and in a vegetative state until she passed away.
We didn’t receive a dime from you. Zero assistance. We pay our taxes, my husband works extremely hard providing for us, and I work extremely hard tending to all our kids’ needs and at the time, Ava’s medical needs at home as we were NEVER given any help or approved for anything, although we have tried and applied multiple times. We were even told to separate and one of us goes on social assistance to ensure our daughter was provided with what she needed. How horrible is that? Something needs to change! Up until Ava’s death we paid for everything – 100 per cent for her medications, 100 per cent for her medical supplies including extra G-tubes, and her feed for her tube.
We did local fundraisers for things we couldn’t afford ourselves and thank God, our community and surrounding areas helped us because you FAILED our daughter. The community helped us purchase equipment she needed – wheel chair, walker, feed pump, ppod chair etc. and that is not ok, telling us all these things would be provided if we were on assistance.
Why should we have to go on assistance for the government to help our child when we pay taxes and don’t owe you anything?
Until we had to experience this with our daughter, I had no idea how horrific the government system truly is, both federal and our own provincial (Newfoundland and Labrador).
Yesterday I received another notice from the federal government stating they were not approving the back pay for our daughter’s disability tax, which she was entitled to ... she passed away before receiving from you. I will not stop fighting for it. You owed it to her and still do regardless. You would be hounding us if we owed you money, so why not pay up Canada? We have been fighting this battle for years now. Enough is enough. We lost our daughter over two months ago and are still faced with the bullshit that we didn’t “provide enough medical information on her impairment,” yet I’ve sent papers approximately six times from countless different doctors.
Our daughter had a fatal genetic illness that took her way too soon – what exactly are you expecting me to send to you? Her ashes? I’m sick to my stomach trying to rationalize why we must have such a hard time accessing money that is rightfully hers. Some may say, just give up – your daughter’s gone, she doesn’t need it anymore. Wrong. Our daughter may physically be gone but the pain is still there. She left behind two sisters that we will ensure get use of that money for whatever is needed.
Our daughter never went without. Regardless of you not helping us. We ensured we provided all and more with my husband working away six-plus weeks at a time before coming home for a couple days to see us, and missing out on that time with his daughter. Time you don’t get back. Time that he could have had if you would have helped like you should have, Canada. Every time we submit papers the processing time is outrageous – five months? Unreal! I kept quiet for a long time. I’m done keeping my mouth shut, Canada! I won’t stop fighting for what is rightfully our daughter’s!