Press Kit 2008
What is the Andre River of Life Foundation?
A child is diagnosed with a terminal disease. The mother finds herself alone. Why? Statistics shows that 78%
(8 out of 10) couples separate or divorce once it is determined that their child suffers a life-threatening or catastrophic
chronic illness. Invariably, mothers become the single care-givers. The struggles of these lone parents and their dying
children remain hidden to the world. So do the impossible choices that these mothers must make. If a mother quits her
job to care of her child, the family finances shatter. If she chooses to continue to work, then her
dying child must often face suffering and treatments alone, a frightening prospect for both mother and child.
The Critical Role of the Andre Sobel River of Life Foundation
Working with select hospitals nationally, the Foundation provides crisis funding when NO other help is available.
Payments go directly to landlords, utility companies, grocery stores, insurers. The hallmark of the ASRL
program is to help within 24 hours. The parameters of assistance are as wide as are the needs of the families. The
Foundation helps to enhance their lives as well as to salvage them from crisis. Grants have been made
to buy wigs for the self-conscious teenager losing her hair to chemotherapy, comfortable beddings, and music lessons
for a sibling feeling the neglect of a mother overwhelmed with the needs of the critically ill child. In other
cases, grants have covered travel cost to bring relatives in to help or, topay for a last vacation for mother and
child.
The speed and simplicity of the process make this foundation unique. The
caregiver does not fill out any forms. Instead, the hospital social workers
identify the financial crisis and apply to the Foundation using an
electronic form. Founder Valerie Sobel is keenly aware that such monies do
not replace the health or the life of the child. She intends only for the
work of ASRLF to soften the crisis and to increase the families' ability to
cope. Her objective remains focused and pragmatic - that relief should come
promptly.
The Inspiration of the Andre Sobel River of Life Foundation
Ms. Sobel's inspiration for the Andre Sobel River of Life Foundation stems
from her own staggering loss - that of her teenage son Andre who died of a
malignant brain tumor. Within the same year, her husband took his own
life. Over the subsequent months of grief, she sought a way to honor their
lives. As she reflected, Ms. Sobel realized that through her ordeal, she
had never needed to worry about finances or the lack of any other resource.
She had been able to help Andre in every imaginable way. She wondered how
she would have managed had financial and emotional support been lacking.
Then the question hit her - what might be the plight of mothers without her
resources? How could they possibly cope? Ms. Sobel says she experienced an
unexpected upwelling of gratitude for her blessings and also a burst of
clarity as to what the mission of the Andre Sobel River of Life Foundation
must be.
Exploring the world of the single care-giver Ms. Sobel found a place of
quiet suffering where mothers staggered from crisis to crisis. They had
few advocates. In one case, the request for help was to provide a part time
caregiver while the mother went to work. The cost of this would have been
$2200. Ms. Sobel asked a mother how much money would allow her to give up
work to care fulltime for her terminally ill son. The answer: $800 per
month. "Just imagine the senselessness of forcing that mother to leave her
dying child and go to work, so she can pay a stranger to do what she most
wants to do" reasons Ms. Sobel.
It is Valerie Sobel's intimate understanding of the stress upon these
families that explains the diversity of expenses covered by the ASRL
Foundation. From shelter and food to transportation for chemotherapy or
alternative therapies, to ballet lessons for a patient's sibling, and burial
costs. Observes Ms. Sobel, "our society is only as humane as its treatment
of those so diminished by crisis that they cannot speak for themselves."
Her work has helped every kind of family, but nearly 70% of households are
those where the mother is the sole parent. In its first six years, the
Andre Sobel River of Life Foundation has assisted thousands of families as
they struggle with life and death. It projects that by the end of 2006, the
total number of recipients will approach 6,000.
At A Glance
Mission Statement:
"The Andre Sobel River of Life Foundation enables single parents of children
with life-threatening illnesses to care for their children fulltime by
relieving financial burdens when other resources are exhausted or
unavailable."
ASRL Vision Statement:
"By caring for the care-giver, we care for the child.”
Currently in their sixth year of operation, the Foundation has launched a
major expansion, and their program now operates at a network of pediatric
hospitals coast-to-coast.
"Letters from Mothers”
A mother struggles with two teens, one of whom has had a heart transplant
and a difficult road ahead. She writes:
"There are so many things to worry about, but you have relieved me of one of
the biggest and allowed me to instead focus on the most important, and that
is my girls. Without the worry of 'are we going to have a home,' I can
focus on A...'s recovery and also on the needs of my other daughters . and
us as a family...I have always taken care of us, and now when I needed to
most, I was at a loss and you took care of us. Thank you from the bottom of
our hearts."
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She writes "...just knowing that she may regain movement in her face has
given my R.... such hope. She has made an effort to make new friends and is
socializing more. She is even talking about going to her senior prom! I
know that if she had not had the surgery, she would never have dreamt of
such a thing! You truly have given her hope and a dream."
Case Histories: The Andre Sobel River of Life Foundation at Work
The P family is composed of a single mother and five children in their late
teens and early 20s. The father has abandoned the family and does not
contribute any financial support. All three sons have hemophilia and are
developmentally delayed, as is one of the daughters. The mother has what is
medically known as a "fragile X syndrome," the cause in part of her
children's medical problems.
The oldest son cannot be cared for at home and lives in a facility. Mom
financially provides for his personal requirements. All of the other
children are dependent on their mother for shelter, care, and their basic
life needs. The family barely scrapes by on assistance received from
government agencies.
A few days before Christmas 2005, their rental house burned to the ground in
what is assumed to be a fire started by their Christmas tree. All but one
child were able to escape the flames. Trapped inside were one son and the
mother, who refused to leave him. The teen was too large for her to carry
him. Ultimately, she managed to push him through a window and jump down
after him. Because of the boy's hemophilia, his mother had taken a grave
risk that he would suffer massive internal bleeding that would kill him.
Luckily, the paramedics on scene rushed him to the hospital where he made a
full recovery within a few days.
This tragic family - already living in hardship - was left at Christmastime
with no home, no personal possessions, and none of the gifts that had been
donated by the hospital treating the children. ASRLF provided rent money
for the first and last months rent in a new apartment, along with grocery,
gasoline and Target and phone cards. In addition, the Foundation arranged
for a special bed for the teen injured in the fall.
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Case: N..... is a 17-year-old diagnosed 2 years ago with leukemia. Mom is
single with one other child, and N.'s father is not paying child support.
N...'s treatment is complicated necessitating experimental treatments. The
mother was also recently diagnosed with cancer and is unable to work. The
family is experiencing great emotional and financial stress.
ASRL Grants to date: $2,056 housing, $185 utilities, $319 car insurance,
$200 groceries, $280 for household expenses.
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Case: D... is a 3-year-old with Williams Syndrome, a neurobehavioral
congenital disorder that affects development. Mom is single and has two
other children, including a newborn. She sold her house in order to buy a
reliable car to get D... to doctor visits, but the insurance lapsed 24 hours
before mom had an accident that totaled the car.
ASRL Grant: $850 car repair, $1204 for 2 mo. housing, $60 utilities.
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Case: P... is a 5-year-old with a Stage IV tumor primarily in the left
kidney. Her prognosis is very guarded. Mom is single and cannot work in
order to care for her daughter. P's 6th birthday is next weekend and momhas no money to make a party or buy gifts.
ASRL Grants: $300 groceries, $250 Target card, $200 household expenses, $500
housing.
The Andre Sobel River of Life Foundation: Hospital Network
In 2005-06, the Foundation launched a campaign to further expand the
network of pediatric hospitals where their program operates; from Los
Angeles to Boston:
Children's Hospital Boston
Boston, MA 02115
www.childrenshospital.orgs
Children's Hospital Los Angeles
Los Angeles, CA 90027
www.chla.org
Children's Hospital Medical Center of Akron
Akron, OH 44308-1062
www.akronchildrens.org
Children's Hospital of Pittsburgh
Pittsburgh, PA 15213-2583
www.chp.edu
City of Hope
Duarte, CA 91010
www.cityofhope.org
Institute for Families
Los Angeles, CA 90027
www.chla.org
Jonathan Jaques Children's Cancer Center
Miller Children's Hospital
Long Beach Memorial Medical Center
Long Beach, CA 90801
www.memorialcare.org
Lucille Packard Children's Hospital at Stanford
Palo Alto, CA 94304
www.lpch.org/
Mattel Children's Hospital at UCLA
Los Angeles, CA 90095
www.pediatrics.medsch.ucla.edu
Texas Children's Hospital
Houston, TX 77030
www.texaschildrenshospital.org
The Children's Inn at the National Institutes of Health
Bethesda, MD 20814-1509
www.childrensinn.org
Children's Hospital of Philadelphia
Philadelphia, PA 19104-4399
www.chop.edu
For a look at a hospital's perspective, this review is from the Mattel
Children's Hospital at UCLA:
"Since last January when we began this partnership with you, your foundation
has assisted twenty of our families in crisis. You have helped with rent
and mortgage payments, food, utilities, gasoline, and gift certificates.
This has meant that some families have been able to maintain stable and safe
homes for their sick children. Others have been able to ensure
transportation to medical appointments to receive care.
For some families,
the assistance has allowed the parent to enrich the child's life while
receiving treatment. Your help has even allowed a terminally ill child to
be in her own home with the level of care necessary for her comfort. These
funds have given families time to regroup and focus on the needs of the
child. Your foundation is unique in that it is the only agency with the
capacity to respond emergently without the reams of paperwork required by
other agencies. This often means the parent does not have to leave the
bedside and can focus on caring for the child." -- Dr. Sakamoto and Staff
Testimonials to the Andre Sobel River of Life Foundation
California First Lady Maria Shriver:
"Thank you so much for all your efforts to help the Chavez family coordinate
the burial of their beloved daughter Paulina. I understand you were an
integral part of the behind the scenes work to secure funding for the family
during their time of need. Please know what in incredible difference you
made and I am so grateful."
I still would like to see the rest of her letter saying: "Thank you for the
outstanding community work and service to our great state - you are truly an
inspiration for all Californians"
Ernest Katz, PhD
Children's Center for Cancer & Blood Diseases, CHLA
Professor of Clinical Pediatrics and Psychology, KECK-School for Medicine,
USC:
"As Director of Behavioral Sciences in one of the largest pediatric centers
(CHLA), I am very familiar with the tremendous difficulties faced by single
parents coping with the serious illness of one of their children. They are
often pressed beyond the breaking point, and I am unaware of any resource
other than the Andre Sobel River of Life Foundation that targets this
at-risk population, offering immediate and direct assistance in desperate
situations. This support is often the difference between a mother's ability
to cope and keep her family intact or get her sick child the life-saving
medical care."
Paul Koretz
California Assemblyman, 42nd District:
"I am extremely impressed with the amazing job that you and your staff have
done in launching the Andre Sobel River of Life Foundation in memory of your
beloved son. It is clear that your efforts have already had an immediate
impact upon many families at risk during some of their darkest days. It is
sad to think of the alternative if they did not have your foundation to lean
on...I stand ready to do whatever is within my power to support your
efforts."
Rep. Ellen Tauscher
California 10th Congressional District:
"Being a single parent today is hard enough, but being a single parent of a
child with a life-threatening illness is both mentally and financially
hard-hitting. This is why the work of the Andre Sobel River of Life
Foundation is so important. By relieving the financial burdens of the
parent, the Foundation not only allows the parent more peace of mind, but
also provides the child with opportunities for a better life."
Nancy Mansfield, PhD
Executive Director, Institute for Families, Patient Advocate, Institute for
Maternal & Fetal Health, Children's Hospital Los Angeles:
"Last week I tried other means to help the parents of S. Martinez; a family
who drove here from across the country with their 5-month only baby to get
medical assistance....I was able to secure medical insurance but failed inmy attempts to help them with all other problems. I was concerned about how
they would buy food; keep their home while they are here, etc...
I made one
phone call and filled out one simple form and your foundation made it
possible for this baby to have a parent by his side during his chemotherapy.
This little baby can rest with his mom by his side and will not be homeless
when his treatment is completed. Your foundation has paid the mortgage on
their trailer, their utilities, their insurance and even their phone bill so
that this baby can have what he needs, his mom."
Valerie Sobel, Founder
Andre Sobel River of Life of Life Foundation
Valerie Sobel is founder and president of the Andre Sobel River of Life
Foundation. Her teenage son died of a malignant brain tumor, and the work
Ms. Sobel now embraces was born with the death of this cherished son. The
Foundation bears his name because it gives her pleasure to see and hear his
name.
Her prior careers have been eclipsed by the passion she feels for the work
of the ASRL Foundation. Its mission is to help lone caregivers, caught in
the devastating struggle for their terminally ill child. This invisible
community - of mostly single mothers have few emotional or financial
resources, and little to no support, observes Ms. Sobel.
In her own case, Ms. Sobel did not suffer from a lack of financial or other
means. Losing Andre was not the end of all that she was to lose. A year
later, to the day, her husband Erwin committed suicide, born of his own
grief.* Ms. Sobel struggled in the relationship with daughter, Simone, who
felt the emotional abandonment that often strikes siblings when parents must
focus nearly fulltime on the needs of a dying child.
Through months of overwhelming pain, Ms. Sobel sought to re-direct her life.
Almost as an epiphany, the idea of her mission came to her, "Experiencing
the sudden onset of a life-threatening illness of a child devastates every
family. But for the single mother without financial resources, it is
unimaginable."
Ms. Sobel has created an ever-growing network of affiliated hospitals where
their program is delivered through social workers. They identify the
financial crises afflicting their patients and their families, (primarily in
the households with only one-caregiver) and turn to ASRL when other
resources for assistance have been exhausted. The hallmark of the
organization is help in 24 hours. Over the past six years, the Foundation
has supported thousands of families. The funds they provide pay for rents
and mortgages, groceries, utilities, transportation and burial costs. The
Foundation's pioneering work has been the subject of a study by the National
Institutes of Health. Ms. Sobel's expertise has led to collaboration
currently with Harvard pediatrician, Dr. Elizabeth Rider, in the writing of
a book, Caring for the Caregiver: A Formula for Survival. Notes Ms. Sobel;
"I know what a mother feels and needs, and by caring for her, we care for
the child."
Herself a survivor of the Communist era, Ms. Sobel fled Budapest during the
1956 uprising against the Soviet regime in Hungary. She remembers walking
eight miles into Austria one night, her younger brother on her back. After
passing through refugee camps, Ms. Sobel and her family settled in Toronto,
Canada. Many uncertain years were to follow .While still in high school, she
was interested in acting and through a fortuitous opportunity, and she was
flown to Los Angeles for an audition. She gained the part she was tested for
and was introduced in "Mr. Hobbs Takes a Vacation," appearing with Jimmy
Stewart. She brought her family from Canada and they became residents of Los
Angeles in 1962. Marriage followed, with the birth of her son Andre and
daughter Simone. As one who has "the ability to re-invent oneself," Ms.
Sobel developed a substantial career as an interior designer, with an
international clientele. Her work was featured in several books and magazine
publications, including Architectural Digest. She remains a member of ASID
(American Society of Interior Designers) "as a keepsake from that career."
Today, in addition to guiding the work and expansion of the Andre Sobel
River of Life Foundation, Ms. Sobel keeps an active professional schedule.
She is a recognized speaker, a trained Court Appointed Special Advocate
(CASA), serves as a charter member of the Women of Washington/Los Angeles
and is a founding member of the Women's Foundation of California's Donor
Circle. Ms. Sobel also participates in The Women's Leadership Council, the
Los Angeles Music Center's Blue Ribbon Society, the Council of Women World
Leaders, and member of the Academy of Motion Picture Arts and Sciences.
When not traveling, Ms. Sobel spends time between Los Angeles and her
mountain home in Idyllwild, California. Daughter Simone is a student at
Lynn University in Florida.
The Andre Sobel River of Life Foundation
was established to offer financial support for single mothers so
that they can remain by their child's side throughout a life-threatening
illness.
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