| It was after Joey's right eye was removed to this disease that I was told to go back and look at pictures that were taken in dimly lit situations and would have red-eye from the flash. If there was a white dot in the pupil instead of the red that was a TUMOR reflecting the light. If someone would have told me about the white dot my beautiful grandson never would have lost his eye to this disease and most importantly his life never would have been an issue. It is very hard for me to accept the fact that I was taking pictures of the tumor and did not know it! IF Joey's pediatrician would have taken the time to look in his eyes with an ophthalmoscope, in a darkened room, at his fifteen or eighteen month well-baby exam; or, IF someone would have told me the story of the white reflection in the pupil of the eye... Joey would be playing in his sandbox and running after his dog like any other three year old. This is what made Joey different from the rest of the beautiful children we met with cancer -- Joey's cancer was easily detectible before it ever became a threat to life. What you need to know: You can take a picture of a tumor or cataract. Always be alerted to your PHOTOS. If you take a red eye picture and do not get a red reflection there could be a problem. Your retina is supposed to reflect light red. In a red eye picture a tumor will reflect white. In most cases of retinoblastoma, there is a history of white dot pictures that would have saved the child�s vision or life. The ophthalmoscope needs to be used at every exam in a darkened room. It is the "stethoscope for the eyes". The pediatrician will simply shine it into the child�s eyes looking for a red reflex reaction. If they do not see a strong red reflex, the child should be referred immediately to an eye doctor. If you are not sure an ophthalmoscope is being used, do not assume it is, ASK. An ocular problem such as a tumor or cataract can start to develop at anytime in childhood. An infant needs an eye dilation exam. The pupil of an infant is small in diameter and needs to be dilated in order for the ophthalmoscope to see tumors and other ocular diseases such as cataracts effectively. It is recommended to have the eye dilation exam before leaving the hospital, the 6 to 8 week well-baby exam and the 6 to 9 month well-baby exam. The pediatricians that are using eye dilation drops want to see all doctors doing the same. It adds only ten seconds of time to the regular exam and costs pennies. Two of the children's lives that Joey's story has impacted follow A West Palm Beach grandmother saw coverage on channel five last February on Joey�s story. Her granddaughter, Elexis, came to visit in April and they went to Disney World. She developed the pictures from the trip and found several white dot pictures like Joey�s. Lexis was taken immediately to an eye doctor. Lexis was the perfect case scenario. The tumor had just started to develop�they froze it off with cryotherapy. Lexis not only has her eye and her vision; she has perfect vision in her eye as far as we know. The doctors will watch her carefully for the next few years, but foresee no problems. Jennifer was not so lucky. Last July, her mother complained to her social worker that there was something wrong with Jennifer�s eye. She was eight months old at the time. The social worker had been looking at Joey�s poster in her Healthy Start Office since last November and had recently seen coverage on �Joey Bergsma Retinoblastoma Awareness Month at the Palm Beach Zoo� on TV. She told the mother to take a picture of Jennifer in dim light�Jennifer�s pupil was white. Her eye was removed�it was already blinded by retinoblastoma tumors. Dr. Timothy Murray performed the eye enucleation at Bascom Palmer in Miami. It is sad that she needlessly lost her eye, but Thank God she has her life. Jennifer had this developing at birth.The �ten second, two cent� eye dilation exam would have saved her eye and her vision. NOTE: Jennifer also had strabismus; the eye was rolling inward. In some cases tumors or cataracts will cause irregular eye movement. Be alerted to your child�s eye movement; like your photos, this could be a clue to something wrong. JOEY IS SMILING..... HIS MESSAGE IS BEING HEARD!!!! REMEMBER...it is up to every parent and grandparent to demand that our pediatricians check for retinoblastoma - The OPHTHALMOSCOPE needs to used at EVERY EXAM in a DARKENED ROOM! It is the "stethoscope for the eyes". Every time the stethoscope comes out to listen to your child's heart, the ophthalmoscope needs to come out to look in your child's eyes. Early detection and referral is vital to saving the vision and lives of our children. The ophthalmoscope is the key. If you are reading this please make sure that your pediatrician is checking for this disease. If we demand it for our own children then pediatricians will check all of the children and this will be the beginning of the end of metastatic retinoblastoma. For information, posters, presentations, and to HELP with this important cause; please contact me at the following: Pam Bergsma (Joey�s grandma) 619 South K St. Lake Worth, Fl. 33460 561-586-2094 [email protected] www.lovejoey.com We were very blessed having Joey in our lives. He was a miracle and his story needs to be told. I will be adding Joey's special journey very soon. Bless you for taking the time to read this. Please tell all of your friends to do the same. Thank you, Joey's Grandma...aka...Pam Bergsma |
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| The Joey Bergsma Retinoblastoma Awareness Fund |
| Be sure to check ALL your photos Especially those taken under low light conditions |
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| It is recommended that you take a picture of your child once a month in a dimly lit room for the purpose of getting the red reflex reaction [red-eye]. |
| If you ever see a white reflection where there should be red, take your child immediately to an eye doctor. This could not only save their vision but their life. |
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| Through AWARENESS we are saving VISION and LIVES! |
| Joey was truly an angel walking on this earth for the last year of his life. I realize that God gave us that extra time with him in order to understand this disease and that it should never have become metastatic. Joey's journey was short but his message was powerful. He was not to be the first to survive this disease but the last child to DIE from it! We can prevent this from happening to another child through awareness. |
| We have started the JOEY BERGSMA RETINOBLASTOMA AWARENESS FUND specifically for this purpose. We appreciate any contribution made to this fund and promise it will be put to good use. Please send donations to: Joey Bergsma Retinoblastoma Awareness Fund Pam Bergsma 619 South K Street Lake Worth, Florida 33460 Thank you |
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