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A chance meeting on the Jersey Shore in the summer of 1969 is where it all
began. A morning of making candy in the family chocolate business followed
by quick dip in the ocean changed lives forever. The chocolate shop became
an integral part of a 3-year courtship culminating in a large Italian Wedding
on a freezing January day. During the next 5 years lots of holidays were
spent working in the family business creating tons of Valentine hearts,
chocolate bunnies, salt-water taffy and other chocolate delights.
The
birth of a son, the first grandson imposed some time restrains but the business
went on. Soon after, Grandma's ill health made everyday operations more
difficult. So after much agonizing the decision was made to close the shop
and sell the property. The grandparents went to Florida and everyone went
on with their lives. During this time Grandpa, carefully guarded all the
candy recipes. They had been part of his treasured possessions along with
his endless confectionery skills long before the Jersey Shore business came
into being.
While
in retirement Grandpa kept his hands literally in chocolate by working for
one of the Sunshine State's leading chocolatiers. Four years had passed
and in l981 a bouncy, bubbly, healthy baby girl, the first granddaughter
entered the picture. How perfect, a loving couple, a 4-year old boy, and
a newborn baby girl all together living in the home of their dreams.
One
year later, number-one granddaughter, Miss Amanda was just about ready to
celebrate her 1st birthday. She could win any baby walker derby hands down.
She took corners on 2 wheels while giggling and talking up a storm. Shortly
after, it became evident that Amanda was having difficulty picking up finger
food and other small objects. Her walking was not progressing. She was loosing
her balance as well as her contentment.
Several
trips to the pediatrician yielded nothing more than, "wait and see".
By the time Amanda was 15-months old she could no longer move on her own.
Her vocabulary was disappearing and finally there was no speech at all.
Eye contact was gone. Local doctors were puzzled. Answers to how and why
this was happening were allusive. Strangers couldn't believe Amanda was
a typical one-year old just 3-months prior.
After
a 5-day evaluation with a world-renowned neurologist the devastating results
were revealed. The doctor was rather casual in his reporting assuming we
were already aware of the extent of the brain damage. We had not idea prior
to that meeting. We were in shock. He offered no explanation as to why or
how or what to do or what to expect from Amanda.
We
had no diagnosis for Amanda's condition until October 1986. The disease
is Rett Syndrome and was not known in the United States until l983, 2 years
after Amanda was born. Only little girls are affected after being born perfectly
normal. The symptoms appear between 12 and 18 months. Fine motor, gross
motor, and speech skills disappear. Seizures usually occur along with curvature
of the spine. Medical problems can become quite involved. The prognosis
is unknown and cognitive ability varies greatly.
Amanda
is an atypical case in that she is still walking at nearly 21 years of age
and is very much aware and responsive to others and her environment. She
communicates with eye gazes and uses a computer.
Although
we had no idea what we were dealing with it was decided to create a super-learning
environment for Amanda. She was put through an extremely rigorous customized
stimulation program. One hundred volunteers per week helped to implement
the program. Amanda worked for 7 hours a day. After 3-months Amanda could
creep around on her own and 16 months later she walked independently.
The
volunteers were a group of very special people. One woman wanted to help
Amanda because she couldn't help her own daughter who was dying from cancer.
Another elderly woman who was widowed at age 35, had her nine children taken
from her. She had no idea where they were including a child with Downs Syndrome.
The
stories just went on and on. We wanted to show our appreciation to the volunteers
in some small but meaningful way so we decided to make candy as holiday
gifts using some of Grandpa's recipes. This was yet another connection between
Amanda and the candy. This went on for many years. Even when Amanda was
able to attend a wonderful school the candy was given to her numerous teachers
as gifts.
As
the years went by Amanda seemed to become more and more interested, in her
own special way when the candy was being made. She wanted to be around during
every part of the process. At this same time our concern for Amanda and
what the future holds for her was becoming more and more part of our thoughts.
We
investigated many programs around the country to try and find an appropriate
setting for Amanda.. Nothing came close to meeting her needs. Now time is
running out in her present placement ending in May, 2002 when she turns
21. The options at this point are almost nonexistent. The few programs that
do exist are not appropriate to Amanda's circumstances and do nothing to
maintain her precious but limited skill level. Most programs have a 5 to
8 year waiting list.
With
few options and critical time concerns we searched for something creative
that would serve Amanda's needs and others at the same time. A group home,
and or a sheltered workshop could benefit many. Thus Heavenly Chocolates
was founded using Grandpa's recipes. A foundation was created to allow tax
deductible contributions to fund a group home and other projects that would
not only support Amanda but many others at the same time. We hope to encourage
community participation; employing seniors, teenagers and anyone who wants
to give of themselves. Heavenly Chocolates, Inc. could mean many things
to many people. Heavenly Chocolates
. A Divine Intervention.
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