Charleigh’s Journey

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In May 2019, my cousin’s daughter Charleigh, who just celebrated her 4^th birthday on July 2^nd was diagnosed with a rare and fatal genetic disorder known as CLN2 Batten Disease.  Charleigh is the only person to be diagnosed with CLN2 in British Columbia and the 14^th child to be diagnosed with CLN2 in Canada. There are only 500 diagnosed cases of Batten Disease in the world. This horrible disease typically presents itself as epilepsy and eventually progresses to blindness, dementia and eventually the loss of all cognitive abilities.  Devastatingly, there is no cure for CLN2 and most children die extremely young; losing all quality of life.

After receiving this diagnosis and learning more about CLN2, Trevor and Jori reached out to social media and local media outlets to tell their story and implore the British Columbia government to approve access to the exorbitantly expensive but potentially life-saving treatment that Charleigh desperately needs to fight this disease. Trevor and Jori have been so fortunate to have the Isaac Foundation advocating for them through Project One Million. This is a Canadian based charity and patient advocacy organization supporting individuals with rare diseases. They have been instrumental in bringing awareness to Charleigh’s story.

Brineura is an enzyme replacement therapy that can help to slow down the effects of CLN2 and, in some cases, halt the progression of the disease altogether.  This critical treatment provides hope that the debilitating effects of CLN2 can be kept at bay and bring that beautiful smile back to sweet Charleigh’s face.  

On June 15 Trevor and Jori learned that the B.C. government had granted them access to the life-saving treatment desperately needed to fight this dreadful disorder and history was made on July 11, 2019, when the first Brineura brain transfusion took place at the B.C. Children’s Hospital in Vancouver. It was what we were all hoping and praying for.

And while our prayers have been answered, there is still a very long road ahead for Charleigh and her family. I marvel every day at the strength and optimism Trevor and Jori have demonstrated as they face every parent’s worse nightmare. They have been lifted up by the incredible love and support from family, friends and even strangers who have sent messages of encouragement, donated to the GoFundMe page, dropped by their house with food and gifts, or organized a fundraising event.

In addition to the tremendous costs for the enzyme replacement treatment, there have been countless procedures, medical expenses and travel costs as Trevor and Jori travel from their home on Vancouver Island to the BC Children’s Hospital on a regular basis. With this diagnosis, Charleigh also needs her parents with her 24 hours a day, 7 days a week resulting in a loss of wages.

Thankfully, the Pollocks have a large circle of family and friends who have been tremendously generous and are working diligently to raise money to help support Charleigh’s Journey. In addition to the GoFundMe page that, as I write this, has raised over $77 000, there have been bottle drives, hot dog sales, cookie sales, fundraising events, and even a Vancouver Canucks game stick autographed by the Sedin brothers that was anonymously donated to the family and auctioned off. It is staggering to witness the outpouring of generosity people have shown the family during this difficult time.

My family and I had the privilege of attending a fundraising event at the Regina Rugby Club where Trevor was a rugby player for many years. We were overcome by the number of people who filled that clubhouse and opened their hearts and wallets in support of sweet Charleigh. Almost all of Trevor’s Saskatchewan family was there as well as many of his childhood and family friends.

The event included a delicious barbeque dinner prepared by Top 3 MasterChef Canada Finalist, Josh Miller who happens to call Regina home. And if that and a worthy cause weren’t enough of a reason to show up, the raffle and silent auction donations were unbelievable. It was especially entertaining to watch Saskatchewan Roughrider tickets and an autographed Saskatchewan Roughrider Jersey auctioned off in a live auction.

It’s excruciating to watch Trevor, Jori and Charleigh go through this nightmare with so many miles between us. At times we feel helpless and at a loss for words, but we hope that these three beautiful humans feel the love, strength, and prayers that everyone who loves them sends every day.

We will never be able to understand why Charleigh was dealt this brutal disease but we are certain we will not give up hope and will continue to rally around the Pollocks as they fight for Charleigh’s life.

If you wish to follow along with Charleigh’s Journey you can join the Facebook page here.

Anyone wishing to donate can do so through the GoFundMe page.