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1985: At age 19, first symptoms appeared, diagnosed by doctors in
England as including: Wasting Syndrome (rapid weight loss from 124 lbs.
to 100 lbs. within a month), jaundice, enlarged liver (presented as
hepatitis or HIV symptoms, though all tests for these have been
negative.) Fever/night sweats, enlarged lymph nodes, migraines, severe
gastro-intestinal symptoms, dizziness, double vision, angina, sinusitis
and mouth/throat blood blisters.
During the following six years, Ambers symptoms became chronic. She
spent these years going from doctor to doctor, trying to develop a
diagnosis and treatment protocol. It was a very difficult time in her
life. Never complaining, always seeking the Lords help and that of good
physicians, Amber never gave up hope.
Unfortunately many roadblocks occurred. Most physicians were unwilling
or unable to take her case for a significant time period, because of her
lack of insurance/finances and humble means. Amber herself gained a
strong understanding of medical thought and practice as she looked for a
way to learn and cure this unique, complex illness within herself.
1992: Amber met Doctor Jean Monroe, who first diagnosed her as
having an immunological condition that in fact caused all of the other
symptoms. Treatment at that time was limited to infusions, a unique
protocol of allergy vaccines, anti-viral IVIG Carimune, immune
modulators and parental nutrition. These treatments were derived from
American research and experimental in Europe. The treatment worked so
well that her weight went up to 126 lbs and Amber felt great! Her
condition was deemed essentially stabilized. She appeared on television,
in newspapers and other media at the request of her physician.
"Amber has come to
the United States hoping that greater compassion and fidelity prevail on
this side of the Atlantic Ocean. However, in place of socialized
bureaucratic red tape Amber has come to understand the realities of
medical insurance. As a pre-existing case, Ambers diagnosis and
treatment has depended on out-of-pocket resources and kind donations."
Timothy Bennett, Husband
Las Vegas, Nevada
1993: The NHS
(National Health Service of England) pulled funding for any additional
treatment with Dr. Monroe. Amber was literally stranded just as her
health was dramatically improving. Her weight again dropped and no IVIG
supplies were made available. Ultimately Amber moved between eight
different counties to appeal to each counties Health Authority for help
from 1993 to 2001. In 1994, Amber received minimal partial funding again
from the NHS. Treatment was given by Dr. Monroe once again, sufficient
for her to maintain a underweight of 98 lbs.
1999: Amber met Doctor Ian Hyams, a top ten
oncologist/immunologist who refined Dr. Monroe's diagnosis calling her
condition HIV negative/CD4 deficiency. Dr. Hyams verbally indicated that
he was appalled with the lack of treatment given by the NHS, and was
surprised Amber was still alive. On compassionate grounds, Dr. Hyams
treated Amber at a greatly reduced cost for the first year.
1999-2000: As part of a clinical trial experiment, Dr. Hyams
applied an advanced American-derived treatment protocol for CD4
deficiency and immune-compromised patients including Carimune, IVIG,
anti-viral infusions, anti-bacterial infusions, antibiotics (in
rotation), high levels of glutathione, high doses of B-12 vitamin,
growth hormone and immune modulators. Under this treatment, Amber again
stabilized and was healthier according to her doctor than in all of her
previous years. Because of this great success, Dr. Hyams presented the
case to the American National Institute of Health (NIH) and in American
medical journals.
2001: A mass was discovered in Ambers lower left abdomen. Her
blood work caused Dr. Hyamns to suspect possible cancer of the stomach.
Her weight dropped to 52 lbs. It was deemed imminently terminal.
God, our Heavenly Father is the Creator of this Universe, and the
Creator of each of us. We are all literally His children, brothers and
sisters one to another. God gives us these life experiences, each
different and each suited for a particular child. As we learn and
endure, He alone determines the outcome and how long we shall live in
mortality. He hears and answers our prayers, not based upon our own
personal desires and needs, but from His vantage and view of an eternal
perspective.
2001-2002: Dr. Hyams attempted to arrange for Amber to go to
Switzerland for a hospital that specialized in this type of care.
Instead, the NHS denied funding, and Amber was sent home in an
ambulance, at 52 lbs. to Shropshire, England to die. However, it was not
the will of the Lord. Instead, in Shropshire she met with a Doctor
Mealings who arranged to have her on intravenous feedings and
antibiotics. Her weight came back up to 88 lbs. She received this
treatment as part of an experimental historical research by the British
government to examine the feeding used on emaciated prisoners of war
from Nazi camps. The mass remained untreated in her abdomen, but basic
blood work does not reveal the indicia of cancer.
"I have been
aiding Amber Soffea while here in the United States. I am an infectious
disease specialist and have determined that Amber has some sort of an
unusual form of immune deficiency. She needs to be seen by a physician
who can correctly diagnose her problem and institute an appropriate
treatment plan."
Dr. Gary Skankey M.D.
Las Vegas, Nevada
2003-2004: Dr.
Hyams moved his practice to Canada. No medical professionals in England
have since used his exact protocol. A charitable sponsor paid to send
Amber to Dr. Hochenegg in Austria for three months. She received a daily
protocol of holistic treatment (both conventional and natural remedies).
With this treatment, Amber again was on the road to recovery. But after
twelve weeks, funding ran out and her condition worsened before it could
be cured. Amber continued with Dr. Hyams and Dr. Monroe, as much as
possible to sustain life. Dr. Monroe suggested she come to the United
States, where she could get advanced treatment and stabilize her
illness.
2005: In February, Amber relocated with her mum Caroline, to the
United States of America in hope of finding a medical solution. Her most
successful improvements came from physicians here and American-derived
protocols, research and diagnostic methods. But, over a short period of
time, her limited finances and humble means has prevented her from
treatment. Amber is now living day-to-day, hour-by-hour hoping for the
right doors to open. Without official U.S. residency, group health
insurance, employment and finances, doors opened to most individuals are
closed to her. So often she is told, We could help, if only
Ambers condition, while very serious and potentially fatal if not
addressed in the immediate future, is also treatable and solvable,
according to doctors. As Amber turns 41 years of age, she has a
remarkable life ahead of her. She desires to be self-sufficient,
working, serving others and contributing more to society. In terms of
what is really needed, she desires to find knowledgeable medical
assistance that will see her though the illness and sustained into
health. She desires to remain in the United States during such
treatment, with her mum. She desires the small financial assistance of
sponsorship to help until she is back of her feet not for temporal and
material needs, but for medical treatment.
If you, like we, are inspired by the courage and perseverance of this
great lady and her horrific medical story of pain and suffering, and if
you have the ability to provide any type of support or assistance, it
would be greatly appreciated.
"Amber Jane Soffea
is a light to the world.
She has tremendous faith, courage, child-like love, honesty and the
brightest attitude of anyone I have ever met. Not only is she extremely
beautiful on the outside, but she has the kindest, most
loving, caring spirit on the inside. She has touched and blessed many
lives, including my own. I am grateful to have you as a friend and hope
others will get to know you as I have; the sweet British angel who has
touched my life for good. I have never met anyone more deserving of help
than Amber. I hope you will find it within your heart to help in
whatever way possible for this very genuine need."
James Jolley, Contributor / Friend
Las Vegas, Nevada
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