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Charleigh's Journey

$75,560 of $100,000 goal

Raised by 861 people in 27 days
Created May 28, 2019
Charleigh's journey started 8 months ago, when she had her first unexplained seizure. Our family had no idea the devastation that would follow from that first scare. Quickly our lives became centered around ambulance rides, hospital stays, medication trials, Neurology specialists, sleep deprivation and constant worry. Genetic testing was performed on Charleigh and waiting for the results was excruciating.

Our world turned upside on May 22nd when we received the horrifying diagnosis of CLN2 Batten Disease.

CLN2 is an extremely rare fatal genetic disorder. Charleigh is the only diagnosis in British Columbia, and 13th child in Canada. There are less than 500 cases worldwide. Children develop normally for the first few years of life. The first definite sign of the disease is epilepsy. As the disease progresses the child will become blind, while also losing the ability to walk, talk and swallow. By age 6 they become completely dependant on a caregiver as they are bedridden. Children with Batten Disease develop dementia and lose all cognitive abilities. Most children will die between ages 6-12 years old.

Charleigh suffers countless, painful seizures a day. She is now being supplemented through a feeding tube. She is still walking and saying a few words but is declining quickly before our very eyes. Between the seizures, medications, and disease she is becoming a shell of the person she was a few short months ago. As a parent there is nothing more painful than watching your child suffer.

There is a enzyme replacement gene therapy called Brineura that is CRITICAL to help slow down Charleigh's rapid deterioration, until hopefully one day there is a cure. This treatment is very new, but clinical trials have shown promising results. The drug is administered bi-weekly through a portal, straight into the brain.

We have connected with an amazing human being by the name of Andrew McFadyen. He is the founder of the Issac Foundation and runs the Project One Million Nonprofit Organization. He is tirelessly advocating for Charleigh to hopefully get the funding for this $750,000 U.S. dollar per year treatment. We hope to make history and bring this life saving drug to British Columbia.

There will be countless procedures, travel to B.C Childrens hospital from Vancouver Island, medical expenses, loss of wages and Charleigh will need her parents full-time support for life now. We will even move provinces and give up everything to give our daughter a chance at life. It is a race against time to get her this treatment. Charleigh is just a few weeks away from her 4th Birthday.

Please help save our little girl and share this link on your facebook timeline. We are incredibly grateful for all the love and support.

Love Jori & Trevor
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CHARLEIGH GOT ACCESS!!!!!!!
Thankyou to everyone that is supporting Charleigh's Journey!!!
Word just came in that the B.C Government has approved access to the life saving enzyme replacement therapy Charleigh needs!!! A big THANKYOU to The Isaac Foundation for tirelessly advocating for Charleigh. She has the fight of her life still ahead....This is just the beginning as they'll have to travel to Vancouver every two weeks for treatment infusions. Your continued support will help this family get through this challenging time. Thank you so much from the bottom of all of our hearts!!!
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Trevor and I are extremely grateful for all the love and support for Charleigh.
We are still in shock that this is really happening. Everyone of you are helping to keep us moving and breathing.
We promise to keep you updated on all our efforts to access Brineura and how Charleigh is doing.
A filmmaker is flying in from Toronto to document Charleigh's story, so there is a face to the paper file, when the government decides if she doesnt recieve access or has a chance at LIFE and hopefully one day a cure for CLN2 Battens Disease.
Thankyou from the bottom of our hearts ❤
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$75,560 of $100,000 goal

Raised by 861 people in 27 days
Created May 28, 2019
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