An open let­ter to the Cana­dian gov­ern­ment by a griev­ing mother

The Gulf News (Port aux Basques) - - Editorial - Sin­cerely, One de­ter­mined and griev­ing mom, Brit­tany Gaudet

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!

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