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Palm Beach County has proclaimed the month of
November, “Joey Bergsma Retinoblastoma Awareness Month”.
Retinoblastoma is the most common eye tumor in
children and the third most common cancer affecting children overall. It
develops in the retinal cell layer of the child’s eye. One in every 12,000
children in the United States is affected with retinoblastoma. Ninety
percent of the cases occur in the first five years of life. When detected
early the eye and vision can be saved and life is not threatened. When left
untreated, the child’s eye is enucleated (removed) in order to save their
life. If retinoblastoma is allowed to escape the eye there is no cure.
Early detection is vital to saving vision and life.
NOTE:
At a recent seminar, an ophthalmologist told us that he diagnosed a
bilateral case (both eyes) in a young girl almost 13 years of age.
What parents need to know:
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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.
www.lovejoey.com
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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. 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, the 6 to 9 month well-baby exam and one
more at the 18 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.
NOTE:
One in every 677 live births in the United States has a treatable eye
disease that will blind if not detected and treated. Cataracts are ten times
more prevalent in infants than retinoblastoma and can blind as early as two
months of age if not treated. Pre mature babies are the only infants in the
US that have an automatic eye dilation exam…we need to ask. Early detection
and referral is the key to saving our children’s vision and, in the case of
retinoblastoma, lives.
My beloved grandson, Joseph
Hollander Bergsma, died needlessly from metastatic retinoblastoma on
December 22, 2000. Joey was three years old. Awareness would have saved
his life. I was taking pictures of the tumor reflecting the light and did
not know it…these pictures would have saved his vision and his life.
More importantly, if an ophthalmoscope would have
been used to screen his eyes at his 15 month or 18 month well-baby exam…Joey
would be alive.
Joey’s journey was short, but his message is powerful.
The last year of his life was a miracle. We were at Sloan Kettering in
Manhattan for 8 months and the Burzynski Clinic in Houston for over 2
months. The last ten days of his life we were at home in Florida. Joey
died in his house at Lake Osborne where he wanted to be. Everyday was a gift
and I thought he was to be the first child to survive this disease. Through
his death I realized the miracle was, Joey is to be the last child to die
needlessly from it.
We
are saving vision and lives through awareness.
Cheryl Bull, a West Palm Beach grandmother saw coverage
on channel five last February on Joey’s story. Her granddaughter, Elexis,
came to visit and they went to Disney World. She developed the pictures
from the trip and found several white dot pictures like Joey’s. Elexis was
taken immediately to an eye doctor. Elexis was the perfect case scenario.
The tumor had just started to develop…they froze it off with cryotherapy.
Elexis not only has her eye and her vision; she has perfect vision in her
eye. The doctors will watch her carefully for the next few years, but
foresee no problems.
Jennifer was not so lucky. Last July, Sandra Padilla
of Lake Worth complained to her social worker that there was something wrong
with Jennifer’s eye. She was eight months old at the time. Susan Slocum
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. Susan told Sandra to take a
picture of Jennifer in a dark room…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.
LEGISLATIVE UPDATE:
The infant eye care bill (HB1117, SB2062) nicknamed
“Joey’s Bill”, was written last year and heard in four committees. In the
last two hearings the vote was unanimously in our favor. We will make it to
the floor this session and “Joey’s Bill” will pass…there is no reason not to
do this for the children of our state.
The House Bill is asking for the eye dilation exam
before they leave the hospital, the 6 to 8 week well-baby exam and the 6 to
9 month well-baby exam. The Senate Bill was changed and is asking for the
eye dilation exam before they leave the hospital, the 6 to 9 month well-baby
exam and the 18 month well-baby exam.
Hopefully, we will have all four exams in the first 18
months of life. This will help ensure healthy vision for all of the
children in our state. No child will loose an eye, go blind or die to a
treatable eye disease again.
Too many children have lost their vision needlessly
and had their lives jeopardized this year alone because we are not doing the
eye dilation exam. Healthy vision should be our children’s birthright.
Working together we will fix this for the children of our state and
our country.
For information, posters,
seminars 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
lovejoey@bellsouth.net
www.lovejoey.com
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