Hello to our COTA for Team Cormack Family!!!
It’s been 5 years since we organized our campaign in support of COTA in honor of of the girls’ journey toward transplants in their battle against ARPKD/CHF. We are eternally grateful for the continued prayers and support every person has shared on our journey thus far and continue to share in the future.
ARPKD & CHF continue to take a toll on Jaina & Chesley – the rare diseases are continuing to progress, although each child is impacted differently. Jaina is 13 & in 8th grade this year, and recent ultrasounds have unfortunately shown more issues with her liver. Chesley is 9 in 4th grade and is impacted in different ways. Both girls have side effects from the diseases and the medications that impact their daily routines & schedules,which are still filled with doctor visits and participation in research & medical studies.
Their family participated in a virtual symposium in September of this year to share their story about ARPKD along with others in the ARPKD community. This was an extremely important event that aimed to do the following things: identify state-of-the-art techniques that could be applied to advance our understanding of PKD biology; discuss challenges and gaps in PKD research that, if addressed, could move the field forward; promote broad awareness of advances in PKD research and highlight existing PKD research resources; foster interaction among members of the scientific community, including PKD researchers, early-stage investigators, and researchers who are new to the PKD field; & obtain feedback from the research community, with respect to what tools and resources are necessary to advance PKD research. We are so hopeful that the scientific & medical community can find ways to help all those impacted by these awful diseases!
The girls remain strong & courageous as they face each day. They are wonderfully talented musicians, participating in recitals throughout the year often without needing to read from sheet music! Both girls are accomplished 4-H showmen & equestrians, enjoying events throughout the week at the Cuyahoga County Fair. Jaina won “The Amazing Shake” competition at her middle school & was able to use that win to help one of her favorite local non-profits. Chesley earned a Young Author recognition at school & continues to excel in her Scouting adventures. Above all, both girls remain incredibly caring, kind hearted and resilient.
Thank you again for choosing to follow & be a part of their journey.
Love,
The Cormack Family