Charlie's Eyes
Donation protected
Charlie’s Got This!
Charlie needs an iris
Charlie’s Aniridia: No iris and Wilm’s Tumor
Our adorable 5-year-old son, Charlie, was born with a genetic defect called Aniridia with congenital bilateral cataracts. It is very rare and so our journey has been a challenge since so little is known about this condition. The most prominent expression of Aniridia is the lack of an iris in the eyes. Without an iris, Charlie was seeing about what most of us see after we have our eyes dilated. Thus, Charlie has worn prescription sunglass since he was 3 months old.
One of the problems with rare diseases is that most medical personnel know little if anything about the disease and has little incentive to learn about it as they may only see a handful of patients with that disease in their entire career. Example: When Charlie was originally diagnosed with Aniridia, we were told the manifestation of this condition would be “just his eyes” and that he would eventually go blind.
Presenters at an Aniridia conference gave us hope that Charlie would have some vision, but there was little mention of other symptoms. Our own research indicated, however, that Aniridia causes GI problems, endocrine issues, and can lead to Wilm’s Tumor, a kidney cancer. A genetics counselor told us Charlie’s gene pattern indicated he would not get Wilm’s Tumor.
When Charlie was three years old he collapsed in extreme pain at the Anchor Center, a school for visually impaired children. We rushed him to Children’s Hospital and after six hours in the and numerous tests, the urologist told us Charlie had Wilm’s Tumor and the tumor was nearly six inches long.
Charlie started chemotherapy three days later but after only three doses of chemo, his tumor ruptured. The tumor was so large, they had to remove the kidney along with the tumor. Chemotherapy continued along with seven rounds of radiation, focused on his abdomen.
During the chemotherapy, Charlie developed a small bowel obstruction, adhesions, and borderline appendicitis all at the same time. Surgery removed his appendix and cleared the bowel obstruction and chemo continued.
Two months after the last chemo treatment, a biopsy indicated the cancer cells had metastasized into both of Charlie’s lungs. Charlie began the second round of chemotherapy, using more aggressive drugs. For this second round of chemo, Charlie would be home for roughly 10 days a month, and the rest would be in Denver at Children’s Hospital. Radiation this time focused on his chest.
After 9 months of this intensive therapy, scans showed some residual cancer cells, so they were surgically removed. Currently, Charlie has one kidney that is only functioning at 35%. The chemo and radiation damaged that kidney and the consensus is that a kidney transplant is in Charlie’s future.
During all of the cancer treatments, we were not too concerned about Charlie’s eyes but once the cancer doctors said there was “no evidence of disease,” we realized that Charlie’s bi-lateral cataracts were growing, especially the one in his right eye. Our research lead us to the Cincinnati Eye Institute which has significant experience in cataract removal, (i.e., replacement of the lens), and implanting artificial iris.
This brings us to our current challenge. The artificial iris and the making of the iris are not covered under insurance; it is considered cosmetic albeit the FDA has recently approved it. Insurance does cover the removal of cataracts, however, the placement of the iris is not covered. The doctors told us this was not cosmetic and that the artificial iris would improve Charlie’s vision and eliminate his headaches caused by the photophobia, e.g., starbursts, and halos.
Accordingly, we took out a loan against our home in Ft. Collins, Colorado and ordered an iris for each of Charlie’s eyes. These iris are made in Germany and customized for each patient.
In September 2018, Charlie had surgery to implant a new lens and iris in his right eye. One of the main questions coming out of this surgery was how quickly Charlie’s brain would adapt to the new signals it received from his right eye. To everyone’s amazement, his vision has improved significantly. The prescription in the right lens of his glasses went from +6.5 to -2.0, i.e., his right eye has gone from being extremely farsighted to slightly nearsighted.
The problem now is that his left eye still has a cataract and no iris so his vision is out of balance and his brain is working hard to accommodate these very different signals from his eyes.
Charlie at Halloween 2018 Charlie’s new eye, Right has the new iris implant.
We scheduled surgery on Charlie’s left eye the end of this month (November). That means a minimum of 2 more trips to Cincinnati from Denver, several hotel nights, rental cars and other travel expenses.
We know this is the right decision and are confident Charlie’s improved vision will help him in school and in all of his other activities but our expenses are scary and we could use some help. We have another son, who is a freshman in high school, and we need to help him with his current expenses, as well as his future college plans.
We so appreciate those of you who are still reading this and might be able to help improve Charlie’s eyesight and to help with the research on the artificial iris. Charlie is part of an ongoing study with the placement of each iris. We hope that this study continues to show positive results and helps others.
Thank you from all of us,
Charlie, his brother Chase, and his mom and dad, Chanda and Michael
Charlie needs an iris
Charlie’s Aniridia: No iris and Wilm’s Tumor
Our adorable 5-year-old son, Charlie, was born with a genetic defect called Aniridia with congenital bilateral cataracts. It is very rare and so our journey has been a challenge since so little is known about this condition. The most prominent expression of Aniridia is the lack of an iris in the eyes. Without an iris, Charlie was seeing about what most of us see after we have our eyes dilated. Thus, Charlie has worn prescription sunglass since he was 3 months old.
One of the problems with rare diseases is that most medical personnel know little if anything about the disease and has little incentive to learn about it as they may only see a handful of patients with that disease in their entire career. Example: When Charlie was originally diagnosed with Aniridia, we were told the manifestation of this condition would be “just his eyes” and that he would eventually go blind.
Presenters at an Aniridia conference gave us hope that Charlie would have some vision, but there was little mention of other symptoms. Our own research indicated, however, that Aniridia causes GI problems, endocrine issues, and can lead to Wilm’s Tumor, a kidney cancer. A genetics counselor told us Charlie’s gene pattern indicated he would not get Wilm’s Tumor.
When Charlie was three years old he collapsed in extreme pain at the Anchor Center, a school for visually impaired children. We rushed him to Children’s Hospital and after six hours in the and numerous tests, the urologist told us Charlie had Wilm’s Tumor and the tumor was nearly six inches long.
Charlie started chemotherapy three days later but after only three doses of chemo, his tumor ruptured. The tumor was so large, they had to remove the kidney along with the tumor. Chemotherapy continued along with seven rounds of radiation, focused on his abdomen.
During the chemotherapy, Charlie developed a small bowel obstruction, adhesions, and borderline appendicitis all at the same time. Surgery removed his appendix and cleared the bowel obstruction and chemo continued.
Two months after the last chemo treatment, a biopsy indicated the cancer cells had metastasized into both of Charlie’s lungs. Charlie began the second round of chemotherapy, using more aggressive drugs. For this second round of chemo, Charlie would be home for roughly 10 days a month, and the rest would be in Denver at Children’s Hospital. Radiation this time focused on his chest.
After 9 months of this intensive therapy, scans showed some residual cancer cells, so they were surgically removed. Currently, Charlie has one kidney that is only functioning at 35%. The chemo and radiation damaged that kidney and the consensus is that a kidney transplant is in Charlie’s future.
During all of the cancer treatments, we were not too concerned about Charlie’s eyes but once the cancer doctors said there was “no evidence of disease,” we realized that Charlie’s bi-lateral cataracts were growing, especially the one in his right eye. Our research lead us to the Cincinnati Eye Institute which has significant experience in cataract removal, (i.e., replacement of the lens), and implanting artificial iris.
This brings us to our current challenge. The artificial iris and the making of the iris are not covered under insurance; it is considered cosmetic albeit the FDA has recently approved it. Insurance does cover the removal of cataracts, however, the placement of the iris is not covered. The doctors told us this was not cosmetic and that the artificial iris would improve Charlie’s vision and eliminate his headaches caused by the photophobia, e.g., starbursts, and halos.
Accordingly, we took out a loan against our home in Ft. Collins, Colorado and ordered an iris for each of Charlie’s eyes. These iris are made in Germany and customized for each patient.
In September 2018, Charlie had surgery to implant a new lens and iris in his right eye. One of the main questions coming out of this surgery was how quickly Charlie’s brain would adapt to the new signals it received from his right eye. To everyone’s amazement, his vision has improved significantly. The prescription in the right lens of his glasses went from +6.5 to -2.0, i.e., his right eye has gone from being extremely farsighted to slightly nearsighted.
The problem now is that his left eye still has a cataract and no iris so his vision is out of balance and his brain is working hard to accommodate these very different signals from his eyes.
Charlie at Halloween 2018 Charlie’s new eye, Right has the new iris implant.
We scheduled surgery on Charlie’s left eye the end of this month (November). That means a minimum of 2 more trips to Cincinnati from Denver, several hotel nights, rental cars and other travel expenses.
We know this is the right decision and are confident Charlie’s improved vision will help him in school and in all of his other activities but our expenses are scary and we could use some help. We have another son, who is a freshman in high school, and we need to help him with his current expenses, as well as his future college plans.
We so appreciate those of you who are still reading this and might be able to help improve Charlie’s eyesight and to help with the research on the artificial iris. Charlie is part of an ongoing study with the placement of each iris. We hope that this study continues to show positive results and helps others.
Thank you from all of us,
Charlie, his brother Chase, and his mom and dad, Chanda and Michael
Fundraising team: Charlie's Team (4)
Chanda Davis Elkins
Organizer
Fort Collins, CO
Alyssa Hart
Team member
Jackie Dobrovolny
Team member
Shawna Guy
Team member