We are all incredibly grateful for every dollar donated and are amazed at the generosity everyone has shown. We can’t begin to explain how thankful we are are! Unfortunately with all the costs associated with going back and forth to Vancouver every two weeks for Charleigh’s treatment infusions and Jori not being able to work due to being a full time caretaker, the funds are quickly depleting and more help is needed. Thank you so much for your continued support to this family, they are living any parents worst nightmare right now and finances should be the last thing on their minds ❤️
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