Dec

Remembering Joey Bergsma

I don’t usually post more than once in a day, but something had been irking all day and I couldn’t figure it out. I felt like I was forgetting something, and then I remembered! On December 22, 2000 little Joey Bergsma lost his battle with Retinoblastoma. I’ve been in contact with Pam Bergsma who is Joey’s grandmother, after finding a white large spot in Simmi’s eye. She spent time talking with me about Simmi and also explaining about Joey’s cancer and she really impressed upon me the importance of every child getting an eye exam with an ophthalmoscope.

In honor of Joey’s memory, I would love for everyone reading this to do two things for him after reading this entry…first, pop by Joey’s website www.LoveJoey.com and read about his life and what his grandmother is doing to raise awareness, and second, check photos of your children if they are under the age of four to five years old. Pam mentioned to me that not ever photo will have a white pupil in it and that sometimes the optic nerve can be captured on film, but as you can tell in Joey’s photo, it is the Retinoblastoma tumor that is reflected by the flash of the camera.

I’d like to share the following email she sent to me. I was concerned about the white spots that captured in Simmi’s eyes and attached the photos for her to view…this is her response:

Hello Angela,

Thank you for contacting me. You are doing what should be done…your beautiful little Simmi needs a thorough eye exam.

The answer to your question is No…the white spot can be sporadic, it can be in all photos and it can be in no photos.

We have a 60 percent chance of photographing an eye disease in a child.   Almost all of Joey’s photos showed both eyes reflecting red. I took hundreds of pictures of my grandson, but only a handful had the white reflection of the tumor. Oddly, those pictures were all taken at the beginning stages of the disease and would have saved his eye and sight; his life never would have been jeopardized.

Sadly, Joey had the worst eye disease a child can have if detected in the late stages. Retinoblastoma shines bright on the back of the eye so we photograph it quite often.  However, most of the photos are of more common eye diseases such as refractive disorders, etc.

Many of the photos end up being nothing at all…the optic nerve will reflect the same as an eye disease.   The only way we can be sure Simmi’s eyes are healthy is an eye exam. We will pray there is nothing to worry about.

Fact…the most common disease in children is eye disease. One in four school age kids in the US is visually impaired.

The chances of Simmi having Retinoblastoma are rare…about one in 12,000 in the US. The chance of her having an eye disorder with or without an odd photo is pretty good.

Note: the 4th most common clue for us to be aware of is… No Clues at all. The child’s eyes will appear perfectly normal, no photos, no irregular eye movement, etc. yet they will be loosing their sight and in some cases they will have the very worst eye disease and their life will be in jeopardy. How do we detect and get these kids to the eye doctor in time…a direct ophthalmoscope in a dark room at every exam and and a simple enhanced exam with dilation for infants.

Please go to the YouTube link at the bottom of my signature below. The link to Joey’s folder will be on the right side of the page…click on savingsightandlives. Please watch ”Joey’s message” which is an introduction to the website, NBC The Joey Bergsma Story, and the CBS coverage.  I use both when conducting my seminars. If you have time, watch them all…each one offers something different.

I have attached an awareness article and poster with a few of “Joey’s kids”. Also a picture of little Aaron who lives in New Mexico. He was diagnosed with bilateral Retinoblastoma…his grandmother saved his life 4 years ago because of “Joey’s story” on the Montel William’s show. He is visually impaired for life because of late detection, but Thank God he has his life. Unlike Joey, he had this developing at birth. A simple eye dilation exam would have given him 20/20 vision.

Joey died because he was denied the standard of care at his well check up. The pediatrician never turned out the lights and used the ophthalmoscope to look at the back of his eye. If this would have happened at his 18 month exam, he would be 12 years old with his eye and his sight. Tragically, the majority of our health care professionals are still not using their ophthalmoscopes at all well check ups!

I know someday, hopefully in the near future, we will give our children the sight they deserve. Needless blindness, eye enucleations and death are not acceptable in 2009. Healthy eyes start at birth! We just need to look!  It is a gift we can fix this…working together, it will be done.

Please update me on the results of Simmi’s exam.  Angela, you are an alert grandma.  Simmi is very lucky she has you.    Contact me at any time. Joey is smiling; his message is being heard.

Peace and Love,

Pam

Pam Bergsma (Joey’s grandma)     Eye Dilation Exam

The Joey Bergsma Retinoblastoma Awareness Foundation (501c3)
619 South K St.
Lake Worth, Fl.   33460
(H) 561-586-2094
(C) 561-379-6374
www.lovejoey.org
“Joey was and continues to be a gift of light and life to other children”