Aaron, a little 11 month old boy from New Mexico,
was recently saved through our awareness
education and outreach.
Click on his photo to see
a larger pic of this angel!
was recently saved through our awareness
education and outreach.
Click on his photo to see
a larger pic of this angel!
| Visit Joey's website at www.lovejoey.com to learn more! |
| JOEY BERGSMA RETINOBLASTOMA AWARENESS |
JOEY BERGSMA RETINOBLASTOMA AWARENESS
Retinoblastoma is the most common eye tumor in children and one of the five most common
cancers 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-five 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 he diagnosed a bilateral case (both eyes)
in a young girl almost 13 years of age. I heard from a young woman who lost her eye at the age of
16.
What you need to know:
You can take a picture of a tumor or cataract as well as other eye diseases. Always be alert 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. Eye diseases will reflect white with flash
photography. We have a 60 percent chance of photographing an eye disease in a child; therefore
this is an important clue between exams. www.lovejoey.com
The ophthalmoscope needs to be used at every exam in a darkened room. It is the “stethoscope”
for the eyes. The doctor will simply shine it into the eyes looking for a red reflex. If they do not
see a strong red reflex, you 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, cataract, etc. can start to
develop at anytime throughout our lives.
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 at birth, the 6 to 8 week
well-baby visit and the 6 to 9 month well-baby visit. 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.
Joey is smiling…his message is being heard.
A West Palm Beach grandmother saw coverage on Joey’s story. Two months later, she took her
granddaughter, Elexis, to Disney World. She developed the pictures from the trip and found a
white dot picture like Joey’s. Lexie was taken immediately to an eye doctor. She was the perfect
case scenario. The tumor had just started to develop…they froze it off with cryotherapy…no
chemo was used!! Lexie is now 7 years old. She not only has her eye and her vision; she has
perfect vision in her eye!
Jennifer was not so lucky. Her mom complained to her social worker that there was something
wrong with 8 month old Jennifer’s eye. Because of Joey’s poster hanging in the Healthy Start
Office and recent news coverage on awareness month at the Palm Beach Zoo, it was caught in
time. Her eye was removed…it was already blind 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. (examples: cross eyes, lazy eye, etc.) Be alert to your child’s eye movement; like your
photos, this could be an important clue to something wrong.
Joey’s story is saving vision and lives across our nation and the world; most recently Rosalinda in
Cuba and little Mattie in Georgia. Joey was and continues to be a gift of light and life to other
children. Education and awareness are important, but I am shown very strongly every day
through the stories of the families across our state, our nation and our world…. the only way we
will fix this is to look in our children’s eyes!
LEGISLATIVE UPDATE:
The Infant Eye Care Bill, nicknamed “Joey’s Bill”, was first heard in the 2002 session in four
committees. Representative Susan Bucher and Senator Ron Klein were the sponsors. HB 1117 /
SB 2062.
2003 session the bill passed through the committees in which it was heard; but just as in 2002,
was not allowed to continue through the process to the floor. Bill Sponsors: Rep. Susan Bucher
(HB 0115), Senator Alex Villalobos (SB 2174).
2004 sponsors: Rep. Bucher (HB 0907), Senator Frederica Wilson (SB 2330). Sadly, the House
refused to hear the Infant Eye Care Bill! Miraculously, the Senate heard the bill on Easter
Monday…it passed committee with all voting in favor.
2005 session: Sponsors; Sen. Frederica Wilson (SB 1086), Rep. Dorothy Bendross-Mindingall (HB
1055). We were finally heard in the House only to be tabled.
2006…for the first time since Joey’s death we do not have a bill filed in the state of Florida. There
is no reason not to do this for our children. It is to the benefit of us all.
The Infant Eye Care Bill, “Joey’s Bill” is requiring a routine eye dilation exam at birth, the 6 to 8
week well-baby exam and the 6 to 9 month well-baby exam. The exam costs less than two cents!
These three exams in the first six months of life will help ensure healthy vision for all of our
children. No child will needlessly loose an eye, go blind or die to any treatable eye disease.
Working together we will fix this for the children of our state and our country.
For information, posters, presentations, and to HELP with this important cause; please contact me
at the following:
Pam Bergsma (Joey’s grandma) lovejoey@bellsouth.net
619 South K St.
Lake Worth, Fl. 33460
561-586-2094 cell 561-379-6374
www.lovejoey.com www.geocities.com/loveujoey3
Retinoblastoma is the most common eye tumor in children and one of the five most common
cancers 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-five 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 he diagnosed a bilateral case (both eyes)
in a young girl almost 13 years of age. I heard from a young woman who lost her eye at the age of
16.
What you need to know:
You can take a picture of a tumor or cataract as well as other eye diseases. Always be alert 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. Eye diseases will reflect white with flash
photography. We have a 60 percent chance of photographing an eye disease in a child; therefore
this is an important clue between exams. www.lovejoey.com
The ophthalmoscope needs to be used at every exam in a darkened room. It is the “stethoscope”
for the eyes. The doctor will simply shine it into the eyes looking for a red reflex. If they do not
see a strong red reflex, you 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, cataract, etc. can start to
develop at anytime throughout our lives.
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 at birth, the 6 to 8 week
well-baby visit and the 6 to 9 month well-baby visit. 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.
Joey is smiling…his message is being heard.
A West Palm Beach grandmother saw coverage on Joey’s story. Two months later, she took her
granddaughter, Elexis, to Disney World. She developed the pictures from the trip and found a
white dot picture like Joey’s. Lexie was taken immediately to an eye doctor. She was the perfect
case scenario. The tumor had just started to develop…they froze it off with cryotherapy…no
chemo was used!! Lexie is now 7 years old. She not only has her eye and her vision; she has
perfect vision in her eye!
Jennifer was not so lucky. Her mom complained to her social worker that there was something
wrong with 8 month old Jennifer’s eye. Because of Joey’s poster hanging in the Healthy Start
Office and recent news coverage on awareness month at the Palm Beach Zoo, it was caught in
time. Her eye was removed…it was already blind 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. (examples: cross eyes, lazy eye, etc.) Be alert to your child’s eye movement; like your
photos, this could be an important clue to something wrong.
Joey’s story is saving vision and lives across our nation and the world; most recently Rosalinda in
Cuba and little Mattie in Georgia. Joey was and continues to be a gift of light and life to other
children. Education and awareness are important, but I am shown very strongly every day
through the stories of the families across our state, our nation and our world…. the only way we
will fix this is to look in our children’s eyes!
LEGISLATIVE UPDATE:
The Infant Eye Care Bill, nicknamed “Joey’s Bill”, was first heard in the 2002 session in four
committees. Representative Susan Bucher and Senator Ron Klein were the sponsors. HB 1117 /
SB 2062.
2003 session the bill passed through the committees in which it was heard; but just as in 2002,
was not allowed to continue through the process to the floor. Bill Sponsors: Rep. Susan Bucher
(HB 0115), Senator Alex Villalobos (SB 2174).
2004 sponsors: Rep. Bucher (HB 0907), Senator Frederica Wilson (SB 2330). Sadly, the House
refused to hear the Infant Eye Care Bill! Miraculously, the Senate heard the bill on Easter
Monday…it passed committee with all voting in favor.
2005 session: Sponsors; Sen. Frederica Wilson (SB 1086), Rep. Dorothy Bendross-Mindingall (HB
1055). We were finally heard in the House only to be tabled.
2006…for the first time since Joey’s death we do not have a bill filed in the state of Florida. There
is no reason not to do this for our children. It is to the benefit of us all.
The Infant Eye Care Bill, “Joey’s Bill” is requiring a routine eye dilation exam at birth, the 6 to 8
week well-baby exam and the 6 to 9 month well-baby exam. The exam costs less than two cents!
These three exams in the first six months of life will help ensure healthy vision for all of our
children. No child will needlessly loose an eye, go blind or die to any treatable eye disease.
Working together we will fix this for the children of our state and our country.
For information, posters, presentations, and to HELP with this important cause; please contact me
at the following:
Pam Bergsma (Joey’s grandma) lovejoey@bellsouth.net
619 South K St.
Lake Worth, Fl. 33460
561-586-2094 cell 561-379-6374
www.lovejoey.com www.geocities.com/loveujoey3
| View Infant Eye Dilation Exam: Parents must request this exam at every well baby visit starting at birth. |