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Janaya's Bucket List-Fighting Cancer

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On February 1st our family received news that turned our world upside-down: My funny, beautiful, energetic 8 year old niece was diagnosed with DIPG, a terminal inoperable brain tumour, leaving her with less than a year with her family.  She will complete a round of radiation therapy, but that will only delay the growth of the tumour.

My name is Trevor and our mom (Tara) and I have set up this fundraiser. This is...

OUR STORY/HER STORY

This is not the first time we have received devastating news in our family.  In May of 2008, our family lost my eldest sisters 10-month-old baby Breaze to SIDS.  It was absolutely devastating and has never gotten easier. It tore us apart, but it also pulled our family together.

In November 2009 my younger sister gave birth to a beautiful and incredibly loved baby girl. Janaya was born hypoxic (without oxygen), and her mother, Amanda was only able to hold her for a short minute before they had to whisk her away to NICU.  The hospital staff couldn’t tell us what was wrong, only that she had an infection in her lungs and they had to give her steroids and antibiotics.  Janaya fought every step of the way, and in early December she was victorious and able to finally go home.

Two months went by without incident, but one evening Amanda called our mom and told her Janaya was having seizures. Janaya was rushed to the Stollery Children’s Hospital where she was given a CT scan and was diagnosed with a very rare condition called Hypopituitarism, which is an under-active pituitary gland. This causes Janaya to lack the necessary hormones like adrenocorticotropic hormone, growth hormone, and cortisol. This condition also causes her to suffer from a decreased immune system, leaving her susceptible to infection. Janaya would require a lifetime of medications, and would spend much of her first three years of life in and out of the hospital battling pneumonia. In addition to hypopituitarism, Janaya was later found to a vision disorder called Optic Nerve Hypoplasia which effects her right eye, she has no depth perception and was also diagnosed with asthma which she eventually outgrew.

Despite her overwhelming number of medical complications, Janaya has grown and thrived under the care of her Mother and family. Janaya started school with a series of educational delays, and evolved to an outstanding grade three student who reads many levels above her grade. She can name every Pokemon and their properties, and has an incredibly vast knowledge of dinosaurs that would rival many palaeontologists.  

Janaya’s recent diagnosis of DIPG has been nothing short of devastating, knowing that such a bright, spunky, beautiful, and an incredible fighter with unlimited potential will never grow up. She will miss important milestones that we take for granted every day: birthdays, graduation, going to university, getting married, having children - the list is endless. For Janaya’s Mother, she must live every day knowing it’s not a matter of “if”, but only “when” her beautiful daughter will leave this earth - a burden no parent should ever have to bare.

Our remaining time with Janaya is incredibly precious, and we’re asking for help to make sure Janaya and her mother have every available moment granted to them. With your help, we can create a life full of memories and fulfill dreams in their short time remaining together and ensure not a single moment is wasted. 

All proceeds will go to Janaya and her family to assist with living costs while her mother takes time off work to be present full time for her daughter.  In addition, your generous donations will go to any medical care outside of what may be covered here in Canada if advanced treatment can be found elsewhere.  Your assistance will help to create memories for Amanda and Janaya that they should have created over a lifetime if it wasn’t for this incredibly rare form of cancer. 

With love and gratitude,
Trevor and Family

Organizer and beneficiary

Tara VC
Organizer
Edmonton, AB
Trevor Chekowski
Beneficiary

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