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Charleigh's Journey

$79,290 of $100,000 goal

Raised by 912 people in 2 months
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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https://www.facebook.com/892365500/posts/10161943448755501/
Trevor's cousin wrote a wonderful blog about Charleigh's Journey, thankyou Lisa for all the love and support ❤
Please share. It is so important to spread awareness of rare disease in hopes of working on a cure.
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HISTORY WAS MADE IN BRITISH COLUMBIA TODAY!!!!
The VERY 1st Brain infusion of the drug Brineura happened at B.C Children's Hospital.
It was a very stressful experience for all involved, especially Charleigh.
I wont go into all the details of the day at this time.
We are beyond grateful for this opportunity, but not looking forward to doing this every 14 days for life.
Today hit us very hard, as the reality of this devastating disease continues to sink in.
Thankyou for all the love and support ❤
#battendisease #brineura #hatebattendisease #Charleighsjourney
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Charleigh after her brain surgery for the infusion port
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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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$79,290 of $100,000 goal

Raised by 912 people in 2 months
Created May 28, 2019
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