Dear Family and Friends,
Do you remember when you turned 16…getting your license, maybe your first car or a job? How about your first kidney transplant? Ok, probably not that. We are excited to be celebrating two major milestones with Kacy this June. Yes, she IS turning 16 and it has been 3 years since her transplant. She just finished 9th grade and is ready to get her license AND has a job. Her life is full, she is happy and her health is stable. But there’s that other thing that lurks around, pokes it’s ugly head out every now and then and reminds us that her body fights a rare disease every single day. You wouldn’t know it by looking at her. You wouldn’t know it by the way she acts, but in her 12 years since her diagnosis with Cystinosis, she has endured countless doctor appointments, lab draws and hospitalizations. She has ingested over 100,000 pills, instilled roughly 10,000 eye drops, and has had a kidney transplant. She handles every bit of it with such grace. It IS her life, but it does not define her nor does it determine where she is going. We are proud of her. Her quality of life and her health are a direct result of her continued compliance. We hope her health remains stable. We hope that she keeps her kidney for years to come. We don’t have any guarantees, so we just continue to fight alongside her.
Our involvement and support of the Cystinosis Research Network continues. I am serving on the Executive Board again, this time as the VP of Family Support and will travel to Berlin for the International Cystinosis Conference in July. The organization continues to fund important research projects. There are approximately 650 people in the US living with Cystinosis who all benefit from the research in some way. Like many rare diseases it receives no federal funding. The funding of research comes from individual fundraising and donations from people like you. CRN remains our lifeline and our gateway to a cure. If you’d like to celebrate with us we welcome your charitable gifts to the Cystinosis Research Network in honor of Kacy. Please consider celebrating her milestones with us... 16 trips around the sun for her and 3 for Frank (the kidney). Your donation to the Cystinosis Research Network gives those living with Cystinosis hope for a better future.
...and Tim says you get a nice tax break if done correctly! ;)
With Sincere Thanks,
The Wyman Family