Averley Clark’s Journey

Hi, my name is Nicole. Our dearest friends have received some devastating news over the past few months. News that parents would never want to hear. I am reaching out here in hopes to fundraise some funds to put towards medical bills, appointments, time away from work and any future expenses they may encounter.

Jana and Brendon are the parents of the sweetest 21 month old little girl Averley. From the moment this little girl entered the world she was the brightest light and brought a tremendous amount of joy and love to all those around her. Over the past few months Averley has been taking on multiple hospital admissions with the most recent one facing a rare genetic, life limiting diagnosis of Gaucher disease. Her team at the IWK is developing a plan to start treatment of this, however there is unfortunately no cure. While alone this diagnosis is devastating news to her family and those around, Brendon and Jana are now faced with the uncertainty of many expenses that come with a hospital stay, being off work and working towards a plan to get their little girl home. While no amount of money could ever take away the pain and hurt they are enduring, funds to help with the financial burden will go a long way.

Posted below is an update from Averley’s mom, Jana:

“Our little Averley has been in and out of the hospital the last month. With this current stay being 14 days, after only being home for 8 days since our admission early in March. These stays have been full of testing, consults with various specialties and a lot of uncertainty. The one thing Brendon and I are sure of, is every day with our Averley is a blessing. Averley has been diagnosed with Gaucher disease, which is a rare genetic disease that is life limiting. At this time, there unfortunately is no cure but there are treatment options to lengthen her life that we are exploring, enzyme replacement therapy(ERT) and a medication that we would need to get from Germany.

Brendon and I have spent hours researching, talking with doctors, doing everything in our power to make sure Averley lives a happy life. She came into this world with so much light and love, and that’s how we want every single day moving forward to be.

Again, we just want to thank everyone who has reached out, supported us and continued to fill Averley’s life with so much love”

Any amount of love, support, funds or sharing this post will mean so much. This family has been through so much and are truly an inspiration. Their strength and resilience has not gone unnoticed, and I know they will continue to take on this battle each and everyday full of love for their little girl.