Donate for Charlotte
Dear Friends of Charlotte,
On November 17, 2015, shortly after Charlotte’s first birthday, the phone rang. It was hard to imagine that the news we received could possibly be true. After months of doctors appointments, seemingly unexplainable medical issues, a few trips to the emergency room, an overnight stay at the pediatric unit, and referrals to specialists in Ophthalmology and Nephrology, Charlotte was diagnosed with Nephropathic Cystinosis.
Some of Charlotte’s immediate challenges are behind us, as this diagnosis allows us to better understand her unique needs and strive to meet them each day. However, we have a bigger challenge ahead as this is something for which there is currently no cure. Current treatments to slow the progression of Cystinosis require a tough regimen of medicines every hour of every day. The treatments must also be adjusted often based on the results of kidney function, frequent blood work to monitor nutrient levels, eye exams, and much more.
Despite the challenges our family remains positive, hopeful and strong. Our love for Charlotte gives us courage and her infectious laugh, bright smile and loving personality give us strength. Since starting her medicines Charlotte has more color in her cheeks, she has more energy, is closer to walking and has shown that she has quite the sense of humor. In short, since finding a diagnosis and modality of treatment, we have gotten Charlotte’s “Spark” back. We have hope. Charlotte never fails to fearlessly embrace each day. Whether going through blood draws, exams, taking multiple medications, or playing with family, she always lights up the room. As parents, much of the hope that keeps us going each day is derived from the amazing research funded by the Cystinosis Research Foundation. As parents, we want Charlotte, and all the beautiful children with Cystinosis, to live long lives full of lighting up a room, and “hope lights our way”.
Please join us in finding improved treatments and a cure by donating in honor of Charlotte.
We leave you with a quote that has helped our family find clarity on this new adventure…
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at it’s destination full of hope.” – Maya Angelou
May love be with you in all that you do,
-The Coe Family