Halle, (12) requires urgent surgery.
Halle was diagnosed with poorly Differentiated Chordoma in 2017. We've been forced to fight for care every step of her journey.
She has been through failed chemo (Ewing Sarcoma protocol), immunotherapy, and a trial drug.
Numerous Dr's in both Canada and the United States have all agreed that surgery followed by proton beam radiation is Halles best chance.
We are in a battle against time, and a system in Canada that we believe is denying her right to proper care.
Halle has been denied MSP funding for surgery with the World Specialty Team in Pittsburgh.
Halles cancer is extremely rare. 1 in 20 million.
The USA (331 million people) sees 325 cases of Chordoma a year. 5% of those cases are Pediatric. (3 kids a year)
Canada (37 million people) would see drastically less. Halles type, Poorly Differentiated Chordoma makes her even more rare.
Fighting to find skilled Drs in Chordoma is not new.
We took Halle to the National Institute of Health (NIH) and the National Cancer Institute (NCI) 2 years ago to try and find appropriate help.
NIH and NCI along side the Chordoma Foundation have worked together to direct every step of us finding Halle proper care since we found them.
The world specialty in Halles cancer exists at the University of Pittsburgh in the USA.
There is a team of professionals who work together with the neurosurgeon in Pittsburgh who specialize in both pediatric neurosurgery and Pediatric Chordoma.
The neurosurgeon at the University of Pittsburgh also studies genetics of Chordoma furthering his ability to treat them.
This team believes they can get 95-98% (+)of the tumour followed by proton beam radiation after surgery which will hopefully take care of any remaining cells post surgery. They are confident in gaining control of Halles disease.
We as parents feel confident with the team in Pittsburgh.
This team has performed numerous of these surgeries but specific to Halles disease, 300 of these surgeries alone!
There is a major difference between Pediatric and Adult disease. This is why we have a current medical separation between the two. It matters!
We want nothing more than the world specialty who has expertise in Halles disease to perform her surgery.
Most of us know through Childhood cancer awareness that Pediatric Cancers get less than 5% of all Cancer funding. Halle gets even less!
She deserves a hand up and a fighting chance!
We are up against a system and red tape blocking us from receiving the appropriate care we believe she deserves!
Apart from scans, it's hard to believe Halle's even sick. Drs are currently amazed at her current abilities and how well she is feeling given her situation.
Halle is an avid competitive gymnast. She is incredibly strong both mentally and physically. She has great talent, she's incredibly kind, loves to laugh and make others laugh, and she truly enjoys her life.
Halles deserves a chance at fulfilling her life dreams!
We have gone through the appropriate measures within the Canadian system to try and get this recommendation for out of country care.
We were formerly warned that it would be hard to get funding for surgeries outside of Canada and to date we have been denied.
Our only option is to now fund the surgery ourselves.
We don't have time to waste.
Halles condition at any point could result in life threatening and medically significant irreversible tissue damage.
This is what we are up against, and I plead with you to help us.
Help us see to it that Halle is not denied her proper right of care.
We are grateful to anyone who chooses to stand up for Halle and assist us in our fight to afford this surgery and to petition her right for proper care.
We would be lousy parents if we didn't fight for her! We ask you to consider if this was your own child, niece, or nephew. Please help us!
Thank you in advance from our family! It truly takes a village!
If you're wanting to help pay for Halles surgery oversees:
Thanks again! ♥️