Donate for Brooke
Brooke was born a happy, healthy and beautiful baby in the Fall 2014. While Brooke consistently fell in the growth chart percentiles for height and weight at each well-visit, she was still growing. She was meeting her developmental “milestones” and was a high energy and active baby, so we were told not to worry. Finally, her growth plateaued almost altogether around 6 months, and we were referred to specialists for “failure to thrive”.
Over the next year we visited a variety of specialists and received several different diagnoses; none of which it turns out were the reason for her poor growth. It wasn’t until Brooke was 16 months old that she was diagnosed with rickets and Fanconi syndrome, with the eventual cystinosis diagnosis received a couple of weeks following.
While we are relieved to have found the cause of Brooke’s medical issues and can now focus on treatment, it has been a long and difficult road. We have found strength in the cystinosis community and the Cystinosis Research Foundation (CRF), as we are all bound by the same hopes, dreams, and purpose. This has given us an immense amount of comfort in and hope for Brooke’s future.
Each dollar that is raised in Brooke’s honor not only helps her, it also helps every other child and young adult with cystinosis. Every cystinosis family before us has experienced similar obstacles, felt similar emotions, and faced similar unknowns. While we are a small community, we are united in our similarities and our desire to give our children the lives they deserve. Each donated dollar puts us all one step closer to finding better treatment options and, ultimately, finding a cure for cystinosis.
We want to especially thank the Stack family. Without your creation of the CRF and constant and tireless commitment to this cause, this would be a much more difficult time for us. With your perseverance and the scientific advancement made by the CRF and its researchers every day, we believe that what was once a devastating diagnosis is something that will be cured in Brooke’s lifetime. It is because of this progress and commitment that we are happy to partner with the CRF and raise funds to find a cure for cystinosis.
Jill and Clay Emerson, Brooke’s parents